Barriers and facilitators associated with long-term follow-up care for childhood, adolescent, and young adult cancer survivors: a systematic review

SYSTEMATIC REVIEW Open Access © The Author(s) 2025. Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit h t t p : / / c r e a t i v e c o m m o n s . o r g / l i c e n s e s / b y - n c - n d / 4 . 0 /. de Beijer et al. BMC Health Services Research (2025) 25:1331 https://doi.org/10.1186/s12913-025-13363-8 BMC Health Services Research †Saskia M.F. Pluijm and Helena J.H. van der Pal shared last authorship. *Correspondence: Helena J.H. van der Pal [email protected] Full list of author information is available at the end of the article Abstract Background Optimal long-term follow-up (LTFU) care for survivors of childhood, adolescent and young adult (CAYA) cancer can improve or maintain their quality of life by prevention and early treatment of late effects. However, optimal LTFU care is not provided to all CAYA cancer survivors. This systematic review sought to identify associated barriers, facilitators and other factors of LTFU care for CAYA cancer survivors worldwide. Methods We included barriers and facilitators from a previously published guideline in 2017, and performed a systematic search using PubMed/Medline to identify studies between 1-1-2017 and 5-6-2025 examining barriers, facilitators and other factors associated with LTFU care from the perspectives of CAYA cancer survivors, diagnosed with cancer ≤25 years of age, healthcare providers (HCPs), and hospital managers involved in the provision of LTFU care for CAYA cancer survivors. Qualitative and (semi)quantitative (survey) studies with multivariable analyses were eligible for inclusion. Standardised evidence tables were made independently by one author and checked by another author to extract relevant information. Results The search yielded 4,677 unique records, of which 230 were selected for full-text screening and 51 articles were included in this systematic review. Twenty-two studies were qualitative, twenty-two were quantitative and seven used a mixed methods design. The previous published guideline provided 19 barriers and 5 facilitators until 2017. Within the current review, 85 barriers, 63 facilitators, and 23 other factors were reported. Main barriers included lack of knowledge, information and awareness of LTFU care, lack of resources, poor transition from paediatric to adult care, and the lack of national/regional LTFU care programmes or clinics. Main facilitators included a treatment summary/ survivorship care plan, involvement of multidisciplinary specialists, education to improve late effects knowledge, a Barriers and facilitators associated with longterm follow-up care for childhood, adolescent, and young adult cancer survivors: a systematic review Ismay A.E.deBeijer1, JessicaTrollip1, Selina R.van denOever1, Renée L.Mulder1, Leontien C.M.Kremer2, GillLevitt3, EditBardi4, AdelaCañete Nieto5, DesireeGrabow6, RiccardoHaupt7, LarsHjorth8, Anna-LiesaFilbert6, TomasKepak9, AnitaKienesberger10, ThorstenLanger11, JacquelineLoonen12, GiselaMichel13, MonicaMuraca7, JelenaRascon14, RoderickSkinner15, AnneUyttebroeck16, Elvira C.vanDalen1, SaskiaM.F.Pluijm1† and Helena J.H.van derPal1,17*† Page 2 of 12Beijer de et al. BMC Health Services Research (2025) 25:1331 Introduction Advances in childhood, adolescent and young adult (CAYA) cancer treatment have led to a large increase in the number of CAYA cancer survivors, with over 500,000 survivors currently reported in Europe [1, 2]. However, these survivors are at high risk of potential late effects of cancer diagnosis and treatment that can affect their quality of life [3, 4]. For example, late effects can include endocrine or metabolic dysfunction, adverse psychosocial events, cardiovascular complications, and chronic fatigue [5–9]. Late effects can occur immediately after treatment or many years later as the CAYA cancer survivor ages [10]. Evidence has shown that prevention, early intervention and appropriate management of these late effects can improve or maintain the quality of life of CAYA cancer survivors and even reduce premature mortality [11]. Therefore, it is essential to provide longterm follow-up (LTFU) care, where all these issues are addressed, for CAYA cancer survivors. The development of different models of LTFU care and implementation tools is progressing rapidly worldwide [12, 13]. However, despite these advances, comprehensive, continuous and effective survivorship programmes are often lacking in LTFU care systems [14]. To provide well-coordinated and timely LTFU care in a multidisciplinary setting, identification of barriers and facilitators associated with the implementation, optimalisation of, and attendance to LTFU care is essential. While Michel et al. provided evidence-based recommendations for the organisation of LTFU care [14], including literature up to 2017, optimal LTFU care structures are still lacking in many countries. Therefore, this systematic review sought to identify barriers, facilitators and other factors of LTFU care for CAYA cancer survivors worldwide by summarizing the barriers and facilitators identified by Michel et al. and by conducting a systematic search for new articles published since 2017. Specifically, we sought to reflect the complexity of LTFU care across different roles and responsibilities by incorporating perspectives from CAYA survivors, healthcare providers (HCPs), hospital managers and policymakers. Methods Identification of previously identified barriers and facilitators First, we extracted the barriers and facilitators associated with LTFU care from the guideline published by Michel et al. [14] and listed them in a table (Table1). Identification of recent barriers and facilitators Second, we conducted a systematic literature review of articles published after 2017. Details of this review are described below. Eligibility criteria As a continuation of the previous search until 2017 [14], all original studies published between 1-1-2017 and 5-62025 were eligible for inclusion. We included qualitative, semi-quantitative (survey) and quantitative study designs. For quantitative studies, we only included those that reported multivariable analyses. Systematic reviews and narrative reviews were excluded, but eligible studies reported in such reviews were included. Information sources and search strategy for identification of studies We searched PubMed/Medline using a combination of terms for ‘children, adolescents and young adults’, ‘cancer’, ‘survivors’, ‘care’ and ‘barriers, facilitators and factors’ (Appendix 1). No language or geography limits were applied. Furthermore, the references of the included papers and relevant reviews were screened for potentially additional eligible studies. Selection process We included studies with CAYA cancer survivors (diagnosed with any cancer type ≤ 25 years of age, irrespective of treatment, and after completion of treatment for their primary cancer), HCPs, and hospital managers and policy makers involved in the provision of LTFU care for CAYA cancer survivors. For mixed populations of eligible and ineligible participants, such as CAYA cancer survivors and survivors of adult cancer, a study was only included if at least 75% of the study population consisted of eligible clear contact/information point, and improved communication. Regarding other factors, treatment with radiation only, older attained age, age at diagnosis, and non-white descent were most frequently associated with less LTFU care. The main factor associated with more LTFU care by survivors was the number of late effects. Conclusions We encourage raising awareness, provision of appropriate information, treatment summaries and survivorship care plans, and advocacy for supportive policies and funding in order to optimise LTFU care and facilitate engagement for CAYA cancer survivors. Keywords Paediatric oncology, Long-term follow up care, Survivorship, Aftercare, Cancer survivors, Barriers and facilitators, Factors Page 3 of 12Beijer de et al. BMC Health Services Research (2025) 25:1331 participants or if separate results for the eligible participants were provided. Data collection process Two independent authors screened study titles and abstracts to identify studies that potentially met the inclusion criteria using Rayyan (https://rayyan.ai) [15]. For studies that were likely to meet the criteria, the full text was screened by two independent reviewers. In cases of disagreement, a discussion was held to determine whether the paper should be included or not, and thirdparty arbitration was used when necessary. Outcomes To be included, a study must have described barriers, facilitators and other factors related to all aspects of LTFU care, such as implementation of LTFU care, adherence to LTFU care, attendance at LTFU care, engagement with LTFU care and receipt of LTFU care. Barriers and facilitators were interpreted as potentially modifiable, whereas other factors were considered non-modifiable or very difficult to modify, i.e. socio-demographic and clinical characteristics. We included barriers and facilitators from both qualitative and (semi-)quantitative survey studies and other factors from quantitative studies, including observational or (semi) experimental studies with measures of association as outcomes. Barriers, facilitators, and other factors associated with a successful transition (from short-term follow-up care to long-term survivorship care and from paediatric to adult LTFU care services) are outside the scope of this review. Data extraction To ensure accuracy and consistency of data collection, we created standardised evidence tables (Supplementary File A) to extract relevant information from the included studies. These tables recorded the study design, participant characteristics, results, and any additional comments on study design components. The evidence tables were prepared independently by one author and checked by another author to ensure accuracy and completeness. In cases of discrepancy or disagreement, the authors discussed the matter until consensus was reached. Third party arbitration to resolve disagreements was not required. Data synthesis We distinguished between barriers and facilitators associated with LTFU care from the perspectives of CAYA cancer survivors, HCPs, hospital management and policy makers. Other factors concerned only the perspective of CAYA cancer survivors. Barriers, facilitators, and other factors are presented separately in the results. We categorised the barriers, facilitators, and other factors into overarching themes reflecting their content (e.g., “Communication and Information”) and ranked from most to least frequently mentioned in the included studies. These themes were conceptual labels developed by the authors after synthesising all the findings. Risk of bias criteria We did not include a risk of bias assessment, because we decided to include all barriers and facilitators mentioned in the included papers independently of the level of quality of the overall methods of the papers as we considered them all relevant. Results Previously identified barriers and facilitators associated with LTFU care Michel et al. [14] reported a total of 19 barriers and 5 facilitators associated with LTFU care from the opinions of survivors and healthcare providers (Table 1). Their Table 1 Barriers and facilitators to LTFU care by survivors and HCPs from the previously published study by Michel et al. [1] Barriers (n identified in included studies) Facilitators (n identified in included studies) • Lack of experience and inadequate preparation/formal training about survivorship (n=26) • Lack of knowledge or awareness about late effects, survivorship issues and needs (n=20) • Lack of time/high workload (n=9) • Lack of adequate insurance or funding for LTFU care (n=7) • Lack of knowledge and familiarity of LTFU guidelines (n=6) • Lack of support and staff to provide LTFU care (n=4) • Lack of staff to provide LTFU care (n=2) • Lack of communication between primary care physician and paediatric oncologists (n=4) • Lack of knowledge about late effects among survivors and parents (n=4) • Lack of a LTFU programme (n=3) • Confusion about role of survivorship programs, oncologists and primary care providers (n=3) • Distance to clinic for survivors (n=2) • Inability to locate adult survivors (n=2) • Survivor-related psychosocial barriers (fear, avoidance) (n=2) • Inadequate access to survivors’ cancer treatment history (n=2) • Limited access to refer survivors to specialist care (n=1) • Low confidence in managing their survivorship care among survivors (n=1) • Difficulties organising an appointment (time, distance, scheduling) (n=1) or finding the right place to go (n=1) • Lack of a transition program from paediatric to adult healthcare (n=1) • Access to support information, medical education seminars, courses or online tools regarding LTFU care (n=14) • Access to LTFU care, including access to cancer survivor specialists, access to support services, like social work and psychology, ability to telephone or email specialist for advice, and more medical/ support staff in primary care office (n=11) • Survivorship care plan (n=8) • Evidencebased LTFU guidelines (n=5) • Adequate insurance (n=1) Abbreviations: LTFU, long-term follow-up Page 4 of 12Beijer de et al. BMC Health Services Research (2025) 25:1331 most frequently identified barrier was a lack of experience and inadequate preparation/formal training about survivorship (n = 26), followed by a lack of knowledge or awareness about late effects, survivorship issues and needs (n = 20), and lack of time/high workload (n = 9). Their most frequently identified facilitator was access to support information, medical education seminars, courses or online tools regarding LTFU care (n = 14), followed by access to LTFU care, including access to cancer survivor specialists, access to support services, like social work and psychology, ability to telephone or email specialist for advice, and more medical/support staff in primary care office (n = 11), and a survivorship care plan (n = 8). Newly identified barriers and facilitators associated with LTFU care Included studies The PubMed search of articles published after 2017 and reference lists of relevant studies yielded 4,677 unique records, of which 230 were selected for full-text screening and 51 articles were ultimately included in this systematic literature review (Fig.1). Supplementary Table 1 provides detailed demographic information for all included studies [16–65], which had a total of 16,248 participants. Twenty-two studies were qualitative, twentytwo were quantitative and seven used a mixed methods design. There was no overlap in the use of identical data sets or participant cohorts between the included studies. Barriers and facilitators associated with LTFU care by stakeholder group CAYA cancer survivors (n = 35 studies, Supplementary Table 2) Out of 34 barriers to LTFU care, the main barrier reported by CAYA cancer survivors was a lack of knowledge, information and awareness regarding late effects and need for follow-up care (n = 12 [16, 17, 19, 20, 22, 23, 25–30]). Other frequently reported barriers were distance to the LTFU care clinic (n = 8 [16, 17, 22, 23, 28, 34, 35, 42]), financial constraints (n = 7 [16, 19, 27, 31–34]), time constraints/competing responsibilities (n = 7 [16, 18, 22, 23, 27, 29, 31]), and GPs/PCPs perceived as unfamiliar with specific cancer and follow-up care (n = 7 [21, 24, 28, 29, 31, 33, 34]). In addition, survivors reported poor/difficult transition from paediatric to adult services (n = 5 [23, 25, 28, 31, 34]), lack of health insurance (n = 5 [23, 34, 36, 37, 64]), emotional distress, fear, or motivational barriers (n = 4 [17, 18, 21, 27]), and difficulty with navigating the health care system (n = 4 [20, 26, 29, 34]). Other barriers were reported in three or fewer studies. Furthermore, CAYA cancer survivors reported 27 facilitators for LTFU care, of which having a treatment summary and/or survivorship care plan (SCP) was the most frequently reported (n = 6 [20, 24, 29, 38–40]). Other Fig. 1 Flowchart of included studies Page 5 of 12Beijer de et al. BMC Health Services Research (2025) 25:1331 facilitators that were reported three times were having a clear contact/information point regarding survivorship care [29, 31, 40], knowledge/information about late effects and the need for long-term follow-up [20, 31, 39]; routine follow-up [16, 29, 31]; communication and/ or care via mobile phones or digital applications [25, 29, 31]; developmentally appropriate survivorship services [25, 27, 49]. Finally, automatic reminders of surveillance appointments and having health insurance [39, 62] were identified twice as a facilitator [26, 31]. Other facilitators were reported only once. HCPs (n = 19 studies; Supplementary Table 3) We identified 40 barriers to LTFU care from the perspective of HCPs. The main barrier was the lack of resources/ financial cost (n = 12 [28, 31, 43–50, 59, 60]), followed by a lack of knowledge about survivorship care among general practitioners (GPs) and primary care physicians (PCPs) (n = 9 [24, 28, 31, 33, 43, 48–50, 59]). The poor or inconsistent transition from paediatric to adult health care (n = 7 [28, 31, 34, 43, 45, 50, 60]), the lack of communication and collaboration between GPs and oncologists (n = 7 [31, 43, 44, 48, 49, 51, 60], and a perceived lack of patient communication, motivation to seek follow-up, and compliance [24, 46–48, 51, 60, 63] ranked third. In addition, time constraints [28, 44, 46, 47, 50, 59] were found in six studies, while lack of (access to) comprehensive medical records [31, 46, 59, 60, 63] was found in five studies. Both lack of support for CAYA cancer survivors [20, 31, 51, 59] and lack of experience and/or expertise [33, 46, 50, 60] were found in four studies. Other barriers were reported in three or less studies. HCPs identified 32 facilitators for LTFU care. Involvement of multidisciplinary medical specialists (n = 6 [34, 43, 45, 49, 52, 59]) and having a standardised follow-up program for survivors (n = 6 [44, 50–53, 59]) were mentioned most frequently. Three facilitators were reported in five studies, namely improved communication and closing the “feedback loop” between specialists and GPs [31, 33, 43, 50, 51]; a treatment summary or SCP [20, 24, 33, 44, 54]; and (centralised) education materials/training on treatment and late effects [43, 45, 47, 50, 52]. Follow-up care guidelines [44, 45, 50, 59] were reported in four studies. Other facilitators were found in two or less studies. Hospital managers and policy makers (n = 2 studies, Supplementary Table 4) In total, eleven barriers and four facilitators from the perspective of hospital managers and policy makers were identified. The lack of a national/ regional LTFU care programme and/or clinics was identified as a barrier in both studies [53, 55]. Other barriers were reported in only one study, i.e. childhood cancer not discussed openly in the country of residence [55], lack of a dedicated LTFU care clinic [55], lack of use of survivorship care guidelines [55], lack of HCPs [55], lack of time to dedicate to care and transport [55], financial problems of the centre [55], lack of health insurance (after 18 years of age) [55], difficult transition problems of survivors from paediatric to adult clinics [56], lack of patient education [55], and insufficient education about LTFU care [55]. Facilitators included the existence of a national/regional LTFU care programme [53], open discussion of childhood cancer in the country of residence [54], use of a treatment summary/SCP [53], and availability of survivorship care training programmes [53]. Barriers and facilitators associated with LTFU care by category (Table2) Across all stakeholder groups, we identified 85 barriers and 63 facilitators related to LTFU care. For CAYA cancer survivors, the largest category of barriers and facilitators involved Communication and Information, followed by Logistics and Accessibility and Care Characteristics. Similarly, for HCPs, the largest category was Communication and Information, followed by Care Characteristics and Logistics and Accessibility. For managers and policy makers, the largest category was Care Characteristics, followed by Communication and Information. Financial and Insurance factors, Community and Support, and Logistics and Accessibility all tied for third place. Other factors associated with LTFU care (n = 12 studies, Table3, Supplementary Table 5) We identified 9 other factors associated with less LTFU care and 14 other factors associated with more LTFU care. Treatment with radiation only [35, 36], older age at cancer diagnosis [36, 42], and black or other descent (vs. white descent) [35, 36] were most frequently associated with less LTFU care. Higher risk or number of late effects [38, 39, 41] was most frequently associated with more LTFU care. Of note, older age at study was associated with more LTFU care in three studies [17, 32, 35], but also with less LTFU care in two studies [39, 56]. Additional other factors were reported only once. As gender was significant in one study [65] but not in six others [17, 32, 35, 39, 42, 56], it was left out from Table3 and Supplementary Table 5. Overall, the largest category of other factors involved Patient Characteristics, followed by Cancer Treatment Characteristics. Non-significant results of quantitative studies The included quantitative studies also reported non-significant results (Supplementary Table 6). Other non-significant results were most frequently found for treatment intensity (n = 3 [39, 56, 62] out of 3 studies), type of cancer diagnosis with leukaemia as reference group (n = 2 [17, 56] out of 2 studies), educational level (n = 2 [17, 56] out of 2 studies), socioeconomic status (n = 2 [39, Page 6 of 12Beijer de et al. BMC Health Services Research (2025) 25:1331 Stakeholder group Themes Barriers (n identified in included studies) Facilitators (n identified in included studies) CAYA cancer survivors Communication and Information • Lack of knowledge/information and awareness regarding late effects and need for follow-up care (n=13) [16, 17, 19, 20, 22, 23, 25–30] • Uncoordinated/unclear information provision (n=2) [26, 29] • Lack of communication between HCPs (n=1) [31] • No reminders to attend appointments (n=1) [27] • Having a written treatment summary and/or survivorship care plan (n=6) [20, 24, 29, 38–40] • A clear contact/information point regarding survivorship care (n=3) [29, 31, 40] • Knowledge/information regarding late effects and the need for long-term follow-up care (n=3) [20, 31, 39] • Communication and/or care using mobile phones or digital applications (n=3) [25, 29, 31] • Surveillance appointments and reminders automatically se(n)t (n=2) [26, 31] • Discussion of required follow-up care with a physician (n=1) [39] • Tracking phone calls (n=1) [54] • Direct communication between HCPs and CCS (without parents) (n=1) [26] • Logistics and Accessibility • Distance to clinic (n=8) [16, 17, 22, 23, 28, 33, 34, 42] • Time constraints/competing responsibilities (n=7) [16, 18, 22, 23, 27, 29, 31] • Healthcare system difficult to navigate (n=4) [20, 26, 29, 34] • Unable to travel without assistance (n=2) [19, 27] • Difficulty with electronic medical records (n=1) [31] • Crowded waiting room (n=1) [26] • Need for parental permission to access health records (n=1) [26] • Medical follow-up terminated by the HCP (n=1) [20] • Difficult to find childcare (n=1) [27] • Coming from large towns (vs. urban areas) (n=1) [58] • LTFU care outside of normal hours to increase attendance (n=1) [27] • GP-led long-term follow-up care consultations (n=1) [29] • Patient Characteristics • Survivor felt well (n=1) [19] • Being ill (n=1) [19] • Having medical problems (n=1) [54] • Financial and Insurance Factors • Financial constraints (n=7) [16, 19, 27, 31–34] • No health insurance (n=5) [23, 34, 36, 37, 64] • Insurance change (vs. stable coverage) (n=1) [57] • Having health insurance (n=2) [39, 62] • Public insurance (vs. private insurance) (n=1) [57] • Care Providerrelated Issues • GPs/PCPs perceived as unfamiliar with specific cancer and follow-up care (n=7) [21, 24, 28, 29, 31, 33, 34] • HCPs perceived as having too little time (n=3) [28, 31, 33] • Lack of trust in HCPs (n=2) [32, 33] • Difficulties talking to new doctors (n=1) [26] • Shifting patient-HCP relationships (n=1) [28] • Having a newer relationship with the main LTFU care provider (n=1) [61] • Endorsing greater confidence in physicians’ abilities to address questions and concerns (n=1) [38] • Having a cancer specialist as the main LTFU care provider (n=1) [61] • Psychological and Emotional Factors • Emotional distress, fear, or motivational barriers (n=4) [17, 18, 21, 27] • Low priority given to follow-up care (n=2) [19, 23] • Fear that providers would not understand them (n=1) [20] • Having an aversion to doctors after treatment (n=1) [33] • Unwilling to come (n=1) [19] • Perceived greater susceptibility to cancerrelated health problems (n=1) [38] • Assigning greater importance to follow-up visits (n=1) [38] • Higher health-care self-efficacy (n=1) [39] • Having more painful treatment memories (n=1) [38] • Higher reported number of motivating factors (n=1) [27] • Community and Support • Unawareness of social environment (n=1) [19] • Social stigma • Meeting other people in a similar situation (n=1) [29] • Highest income neighbourhood (n=1) [65] Table 2 Barriers and facilitators associated with LTFU care by stakeholder group Page 7 of 12Beijer de et al. BMC Health Services Research (2025) 25:1331 Stakeholder group Themes Barriers (n identified in included studies) Facilitators (n identified in included studies) • Care Characteristics • Poor/difficult transition from paediatric to adult services (n=5) [23, 25, 28, 31, 34] • Interventional/painful procedures (n=1) [26] • Routine follow-up care (n=4) [16, 29, 31, 62] • Developmentally appropriate survivorship services (n=3) [25, 27, 49] • Having a regular doctor for non-cancer care (n=1) [39] • Seeing a primary care provider for a cancerrelated problem (n=1) [38] • Having more primary care provider visits (n=1) [65] • HCPs • Communication and Information • Knowledge gap of survivorship care in GPs/PCPs (n=9) [24, 28, 31, 33, 43, 48–50, 59] • Lack of communication and collaboration between GPs and oncologists (n=8) [31, 43, 44, 48, 49, 51, 60] • Perceived lack of patient communication, motivation to seek follow-up, and compliance (n=7) [24, 46–48, 50, 60, 63] • Uncertainty about whose responsibility it is to provide different aspects of survivorship care (n=3) [31, 48, 51] • Patients unclear who to approach for health issues (n=1) [44] • Overdue and insufficient late effects communication with CAYA cancer survivors (n=1) [28] • Anxiety/distress that survivors may experience when returning to the medical setting in which they were treated for cancer (n=1) [63] • Improved communication and closure of the “feedback loop” between specialists and GPs (n=5) [31, 33, 43, 50, 51] • (Centralised) education materials/training on treatment and late effects (n=5) [43, 45, 47, 50, 52] • Informational resources covering diverse aspects of the survivorship experience (n=1) [49] • Knowledge and awareness about LTFU care among survivors and important stakeholders (n=1) [59] • Reported results of LTFU care (n=1) [59] • Care Characteristics • Poor or inconsistent transition from paediatric to adult health care (n=7) [28, 31, 34, 43, 45, 50, 60] • Labour intensity of survivorship care plans (n=3) [43, 49, 54] • Lack of standardized LTFU care program (n=3) [46, 51, 53] • Complex healthcare systems which are difficult to navigate (n=3) [46, 49, 51] • Lack of standardized guidelines (n=1) [46] • Incomplete or unclear SCPs (n=1) [48] • Inequities in care available between states and cancer types, as well as between paediatric and adult settings (n=1) [49] • Lack of specialised nurses (n=1) [50] • Lack of skills regarding late effects among HCPs outside LTFU care team (n=1) [59] • Survivor no shows (n=1) [59] • Low trust in GPs and local care clinics (n=1) [59] • Lack of collaboration with psychosocial care facilities (n=1) [59] • Lack of (access to) psychosocial care facilities (n=1) [59] • Uncertainty about which to use (n=1) [60] • Involvement of multidisciplinary medical specialists (n=6) [34, 44, 45, 49, 52, 59] • Having a standardised follow-up program for survivors (n=6) [44, 50–53, 59] • A written treatment summary or survivorship care plan (n=5) [20, 24, 33, 44, 54] • Follow-up care guidelines (n=4) [44, 45, 50, 59] • Nurse-led survivorship care (n=2) [43, 51] • Involvement of GPs and local care facilities (n=2) [43, 59] • Risk-stratification of survivors (n=1) [43] • GP-led care including the traditional family model (n=1) [43] • Smaller patient numbers (n=1) [45] • Equitable and sustainable care systems (n=1) [49] • Routine follow-up consultations (n=1) [51] • A more systematic involvement of alreadyexisting local care services (n=1) [51] • Care coordination and continuity (n=1) [31] • Availability of psychosocial support services (n=1) [63] Table 2 (continued) Page 8 of 12Beijer de et al. BMC Health Services Research (2025) 25:1331 Stakeholder group Themes Barriers (n identified in included studies) Facilitators (n identified in included studies) • Logistics and Accessibility • Time constraints (n=6) [28, 44, 46, 47, 50, 59] • Lack of (access to) comprehensive medical records (n=5) [31, 46, 59, 60, 63] • LTFU care too far away or too expensive for survivors (n=3) [59, 60, 63] • Lack of administrative staff and data managers (n=1) [43] • Large patient volumes seen by GP services act as a competing interest to furthering childhood cancer survivorship care education (n=1) [43] • Concerns about privacy issues (n=1) [46] • Lack of access to specialists who provide specific elements of survivorship care (n=1) [48] • Lack of capacity to treat both acute cancer patients and survivors (n=1) [59] • Lack of LTFU care staff (n=1) [59] • Organizational issues with planning multiple examinations on same day (n=1) [59] • Care appointments unavailable outside of normal business hours (n=1) [63] • Limited size of survivorship clinic (n=1) [63] • Availability of a national database to hold survivor information (n=2) [43, 45] • Leveraging on existing adult survivorship care infrastructure (n=1) [43] • (Intelligent) IT system that is sharable between different care facilities (n=1) [59] • Financial and Insurance Factors • Lack of resources/financial cost (n=12) [28, 31, 43–50, 59, 60] • Dealing with insurance (n=2) [20, 63] • Convincing hospital managers to allocate resources for LTFU care is a time-consuming process (n=1) [59] • Community and Support • Lack of support for CAYA cancer survivors (n=4) [20, 31, 51, 59] • Childhood cancer not talked about openly in country of residence (n=1) [53] • Lack of leadership support (n=1) [46] • (Inter-)national network for LTFU care strengthens argumentation for LTFU care (n=1) [59] • Understanding of hospital management (n=1) [59] • Attention for diversity, equity, and inclusion (n=1) [63] • Survivors’ trust in their healthcare system (n=1) [63] • Care Providerrelated Issues • Lack of experience and/or expertise (n=4) [33, 46, 50, 60] • Motivated and committed HCPs to take care of survivors (n=2) [59, 63] • Motivated HCPs to convince stakeholders for LTFU care (n=1) [59] • Positive interpersonal relationships between survivors and healthcare providers (n=1) [59] • Managers • Financial and Insurance Factors • Financial problems of centre (n=1) [55] • Lack of health insurance (after 18 years of age) (n=1) [55] • Care Characteristics • No national/regional LTFU care program and/or clinics (n=2) [53, 55] • Lack of HCPs (n=1) [55] • Difficult transition problems of survivors from paediatric to adult clinics (n=1) [55] • A national/regional LTFU care program (n=1) [53] • Use of a treatment summary/survivorship care plan (n=1) [53] • Community and Support • Childhood cancer not talked about openly in country of residence (n=1) [53] • Open discussion of childhood cancer in country of residence (n=1) [53] • Logistics and Accessibility • Having no separate LTFU care clinic (n=1) [55] • Lack of time to dedicate to care provision and transport provision (n=1) [55] • Ongoing advocacy to direct resources toward the systematic development of comprehensive survivorship initiatives (n=1) [49] • Continuous financial support and commitment (n=1) [59] • Financial aid for survivors to participate in LTFU care (e.g., reimbursement for survivors living far away) (n=1) [59] • Communication and Information • Not using survivorship care guidelines (n=1) [55] • Lack of providing knowledge to patients (n=1) [55] • Insufficient education about LTFU care (n=1) [55] • Availability of survivorship care training programs (n=1) [53] • Abbreviations: CAYA Childhood, Adolescent, and Young Adult, CNS Central nervous system, GPs General practitioners, HCPs Healthcare providers, LTFU Long-term follow-up, PCPs Primary care physicians Table 2 (continued) Page 9 of 12Beijer de et al. BMC Health Services Research (2025) 25:1331 62] out of 2 studies), and income (n = 2 [42, 56] out of 2 studies). With the exception of gender, none of the significant findings identified in the included studies were outweighed by a greater number of non-significant findings. In other words, the results described in Tables2 and 3 were all found to be statistically significant more often than they were statistically non-significant. Discussion This systematic review sought to identify barriers, facilitators, and other factors related to LTFU care. The previous guideline provided 19 barriers and 5 facilitators until 2017 [14]. The current study also included articles published after 2017 and identified 85 barriers and 63 facilitators reported by CAYA cancer survivors, HCPs, and hospital managers/policy makers involved in the organisation of LTFU care. Communication and information was the most important category of barriers and facilitators for survivors and HCPs, while managers mainly identified barriers and facilitators related to care characteristics. In addition, we found 9 other factors associated with less LTFU care and 14 factors associated with more LTFU care, consisting mainly of patient characteristics such as age at diagnosis, attained age, descent and treatment with radiation. Previously, Michel et al. [14] identified lack of experience and inadequate preparation/formal training in survivorship as the most common barrier to LTFU care. The most common barrier in the current study, which was the second most common barrier identified by Michel et al., concerned the widespread lack of knowledge, information and awareness of late effects and LTFU care. These barriers highlight the urgent need for targeted education and awareness initiatives to bridge this gap. An example of such an initiative are the Person-centered, Laylanguage, Accessible, International, Navigable (PLAIN) summaries, started in the PanCare group and continued in the PanCareFollowUp ( h t t p s : / / p a n c a r e . e u / p l a i n - l a n g u a g e - s u m m a r i e s /) [66] and EU-CAYAS-NET ( h t t p s : / / b e a t c a n c e r . e u / ) projects. The PLAIN summaries provide information on late effects and recommendations for LTFU care and are based on the PanCareSurfUp, PanCareFollowUp, and International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) late effects surveillance guidelines [14, 67–69]. The EUCAYAS-NET project aims to establish a European network of young cancer survivors, a knowledge centre and interactive social networking platform that empowers cancer survivors to advocate for their needs and rights. Another useful initiative is the SCP, which was also found as a facilitator both in the current study and by Michel et al. [14]. SCPs, such as the North American Passport for Care [70] and the European PanCare Survivorship Passport [71, 72], can help HCPs to provide LTFU care more efficiently and increase knowledge about late effects and related LTFU care, thereby improving survivors’ quality of life and long-term health outcomes. Lastly, with the help of institutions like Childhood Cancer International, local childhood cancer communities across the globe can be brought together to increase awareness, spread knowledge, and help survivors achieve a better quality of life ( h t t p s : / / w w w . c h i l d h o o d c a n c e r i n t e r n a t i o n a l . o r g). Inadequate resources, such as a lack of time and funds to travel to the survivorship clinic or to hire sufficient staff, emerged as another common challenge, also previously identified by Michel et al. [14]. In certain clinics, LTFU care is not available at all, which was identified as the main barrier by hospital managers and policy makers. On the other hand, access to late effects specialists and support services, such as social workers Table 3 Other factors significantly associated with LTFU care Themes Factors significantly associated with less LTFU care Factors significantly associated with more LTFU care Patient Characteristics • Older age at cancer diagnosis (n=3) [36, 42] • Black or other descent (vs. white descent) (n=2) [35, 36] • Older age at study (n=2) [39, 56] • Longer time since cancer diagnosis (n=1) [39] • Hispanic and other descent (vs. non-Hispanic white) (n=1) [39] • Being at high risk for late effects/higher number of late effects (n=3) [38, 39, 41] • Older age at study (n=3) [17, 32, 35] • Previous relapse (n=1) [42] • Hispanic descent (vs. white descent) (n=1) [36] • Less time since cancer diagnosis (n=1) [56] • History of leukaemia, lymphoma, or solid tumour (vs. CNS tumours) (n=1) [42] • Earlier year of cancer diagnosis (n=1) [64] • More recent period of diagnosis (n=1) [65] • High morbidity (n=1) [65] • Older age at cancer diagnosis (n=1) [65]* • Younger age at cancer diagnosis (n=1) [65]* Cancer Treatment Characteristics • Treatment with radiation only (n=2) [35, 36] • Lack of history of stem cell transplantation (n=1) [36] • Treatment with radiation and surgery (n=1) [36] • Treatment with surgery only (n=1) [35] • Lack of history of stem cell transplantation (n=1)[65] • Treatment with radiation (n=1)[65] • Treatment with anthracyclines (n=1)[65] Note: The numbers in parentheses indicate the frequency of the factor across the included studies. Abbreviations:CNS Central nervous system, LTFU Long-term follow-up * In this study, older age at cancer diagnosis was associated with greater adherence to colorectal cancer adherence and younger age at cancer diagnosis was associated with greater adherence to cardiomyopathy adherence. PRISMA 2020 Checklist Section and Topic Item # Checklist item Location where item is reported 24c Describe and explain any amendments to information provided at registration or in the protocol. NA Support 25 Describe sources of financial or non-financial support for the review, and the role of the funders or sponsors in the review. NA Competing interests 26 Declare any competing interests of review authors. NA Availability of data, code and other materials 27 Report which of the following are publicly available and where they can be found: template data collection forms; data extracted from included studies; data used for all analyses; analytic code; any other materials used in the review. NA From: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021;372:n71. doi: 10.1136/bmj.n71 SUPPLEMENTARY FILE A: evidence tables Part I: Barriers and facilitators associated with LTFU care Prasad et al. Barriers to long-term follow-up in adolescent and young adult survivors of childhood cancer: Perspectives from a low–middle income setting. Pediatr Blood Cancer. 2021;e29248. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To identify the reasons for delay and loss to follow-up. Study design: Semi structured interviews Country of origin: India Type of participants: N= 79 CAYA cancer survivors (no information on gender) Number/percentage of CAYA cancer survivors: N=79 CAYA cancer survivors (100%) Age at primary cancer diagnosis: Not reported. Follow-up time: Median duration of follow-up: 16 years (range 7–31); starting point not reported Age at time of study: Not reported Type of cancer diagnosis: Not reported Profession: Primary outcome measure: Main barrier to long-term follow-up perceived by adolescent and young adult survivors of childhood cancer. Secondary outcome measure: Additional important reasons for delay and loss to follow-up care. Barriers for delayed follow-up care - Financial: travel and stay - Financial: medical - Medical illness - No time: busy with job/family/school - Lack of awareness regarding need to FU - Long time since diagnosis - Long distance - Forgot/low priority given to follow-up - Social-spouse unaware - Afraid of follow-up - Follow-up elsewhere - Survivor felt well - Unwilling to come - Social stigma - No one to accompany - Loss of income Facilitators for return to clinic after a long gap - Routine follow-up - Tracking phone call made by doctor or clinic support staff - Medical problem Study design components The article involves a letter to the editor. Not applicable Years of experience: Not applicable Abbreviations: CAYA, childhood, adolescent, and young adult McLoone et al. Childhood cancer survivorship care: A qualitative study of healthcare providers’ professional preferences. 2022. Front. Oncol. 12:945911 Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To better understand the views of oncologists, nurse specialists, and GPs on hospital-based, GP-based, and shared-care models, to explore health professionals’ views on the limitations of these models in their current form, as well as what they consider to be critical to the successful implementation of feasible, sustainable, engaging and equitable life-long survivorship care. Study design: Semi-structured interviews Country of origin: Australia and New Zealand Type of participants: N= 70 healthcare providers Number/percentage of CAYA cancer survivors: N=0 (0%) Age at primary cancer diagnosis: Not applicable Follow-up time: Not applicable Age at time of study: Not applicable Type of cancer diagnosis: Not applicable Profession: GP: N=51 Oncology staff: N=19. Lead pediatric oncologist at each of the tertiary survivorship clinics (n=9) and their lead survivorship nurse (typically a clinical nurse consultant) Primary outcome measure: The views and preferences of pediatric oncologists, survivorship nurse coordinators, and GPs currently caring for childhood cancer survivors. Secondary outcome measure: Not applicable Barriers to successful survivorship care - Difficulty in securing enough protected resources (time, space, people) to dedicate to survivorship care - A current lack of transition services, causing a reluctance to discharge survivors - Lack of communication and collaboration with treating teams during treatment left GPs feeling that they lacked insight into their patient’s cancer care and how best to continue to deliver care in a collaborative manner - Lack of administrative staff to manage scheduling and correspondence, as well as data managers to oversee record-keeping between sites - Survivorship care plans are labor intensive and their dissemination was “dependent on workload” - Low confidence in local GPs’ knowledge of survivorship care - The large patient volumes seen by GP services act as a competing interest to furthering childhood cancer survivorship care education, which constitutes only a very small proportion of their case load Facilitators to successful survivorship care - Traditional , hospital-based case management with multidisciplinary team involvement (HCPs believed this offered the highest level of expertise and knowledge available to survivors) - Greater involvement of multidisciplinary medical specialists (e.g. neurology, adolescent medicine, onco-fertility) and allied health professionals (e.g. Study design components Not applicable (n=10) (noting that two oncologists led two clinics each and one nurse led two clinics). Years of experience: GPs: mean 28.25 years (SD 12.2) Not reported for oncology staff. dietitians, physiotherapists, disability service coordinators) within survivorship clinics - Risk-stratification to improve the efficacy of survivorship care delivery - Leveraging on existing adult survivorship care infrastructure to also accommodate adult survivors of childhood cancer - Nurse-led survivorship care, with survivorship nurses coordinating survivors’ care by liaising with a multidisciplinary team and the survivors’ nominated GP - The involvement GPs in follow-up care to function as the liaison for the transition out into the community - Improved communication and closure of the “feedback loop” between specialists and GPs (oncologists continued to want to receive progress and updates on survivors’ health outcomes and their recommended surveillance schedules from GPs. Similarly, GPs wanted greater involvement throughout the course of their patient’s cancer treatment so that they were in a well-informed position to continue care during survivorship) - GP-led care was seen to overcome the many logistical and financial issues families faced when trying to access tertiary-led care, which is only located in major urban cities - The traditional family model within GP services provided a sense of long-term continuity and the opportunity for whole-family care, noting the impact of childhood cancer on the whole family - Continuing onward from the treatment stage, GPs noted a prescriptive approach during survivorship was crucial to accurately counsel survivors, clarify responsibilities, and review and formulate management plans - According to GPs, clear contact information, referral pathways, and the ongoing availability of oncology staff is crucial for resolving queries and making referrals back to hospitals - A national database to hold survivor information (for example, diagnostic, treatment, and late effects data) - Using nationally collected information to develop centralized education materials for GPs and survivors across sites Abbreviations: CAYA, childhood, adolescent, and young adult, GP, general practitioner Caciotti et al. Late effects care for childhood brain Tumor Survivors: A Quality-Improvement Initiative. 2022. Pediatr. Hematol. Oncol. J, 39:4, 291-303 Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To improve the delivery of LTFU care. Study design: A qualitative survey was distributed to health-care team members to assess their perspective on potential areas for improvement. Country of origin: Canada Type of participants: N= 17 healthcare providers Number/percentage of CAYA cancer survivors: N=0 (0%) Age at primary cancer diagnosis: Not applicable Follow-up time: Not applicable Age at time of study: Not applicable Type of cancer diagnosis: Not applicable Profession: 70% physicians or nurse practitioners, 30% nurses or allied health Years of experience: Not reported. Not reported for oncology staff. Primary outcome measure: Health care team members’ perspective on potential areas for improvement for LTFU care. Secondary outcome measure: Not applicable Facilitators to LTFU care - Having additional healthcare professionals in the neuro-oncology follow up clinic - The multi-disciplinary medical team approach during and after treatment. Suggestions for improvement included finding ways to ensure consistent participation of social work, dietetics, endocrinology, pediatric neurology and psychiatry, providing better patient education surrounding treatment and late effects, allocating more time toward late effects screening, surveillance and counseling, and having a standardized follow-up plan for these survivors. Study design components Stake-holder feedback was collected regarding LTFU care by using a healthcare provider ad hoc survey. Surveys were sent to all providers involved in the care of neurooncology patients, those providing survivorship care to the childhood cancer cohort, along with allied health colleagues working in the pediatric oncology program. Abbreviations: CAYA, childhood, adolescent, and young adult, LTFU, long-term follow-up Arpaci et al. Trying to catch up with life’: The expectations and views of adolescent survivors of childhood acute lymphoblastic leukemia about long-term follow-up care: A qualitative research. Eur J Cancer Care. 2022;31:e13667. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To explore adolescent survivors' views and expectations about long-term follow-up care. Study design: Semi-structured, indepth interviews Country of origin: Canada Type of participants: N= 16 adolescent survivors of leukemia (56.2% female) Number/percentage of CAYA cancer survivors: N=16 (100%) Age at primary cancer diagnosis: Mean age at diagnosis 7.37 years ± 3.55, range 3–14 Follow-up time: Mean time since the completion of treatment 5.44 years ± 3.13, range 2–11.7 Age at time of study: Mean age at study 15.37 years ± 2.12, range 12– 19 Type of cancer diagnosis: Acute lymphoblastic leukemia Profession: Not applicable Primary outcome measure: Adolescent survivors of acute lymphoblastic leukemia views and expectations from LTFU care. Secondary outcome measure: Perceived benefits or barriers related to LTFU care. Perceived barriers to follow-up care - Medical-hospital related (e.g. hospital reminds survivors of their negative memories) - Interventional-painful procedures - Anxiety about getting negative results - Waiting a long time to see the doctor - Crowded waiting room - Negative memories - Social life - School (not being able to attend classes) - Socio-economic (transport-cost expenses) Benefits were reported in the paper but not in this evidence table. Study design components Survivors who had completed treatment at least 2 years ago were involved in the study. Interviews were audiorecorded and transcribed verbatim. An inductive thematic approach was used to analyse the data. Years of experience: Not applicable Abbreviations: CAYA, childhood, adolescent, and young adult, LTFU, long-term follow-up Van den Oever et al. Barriers and facilitators to implementation of the interoperable Survivorship Passport (SurPass) v2.0 in 6 European countries: a PanCareSurPass online survey study. J. Cancer Surviv. 2023;1–13. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To identify barriers and facilitators to the implementation of the SurPass v2.0 with regard to the care process as well as ethical, legal, social and economic aspects. Study design: Semi-structured survey study Country of origin: Austria, Belgium, Germany, Italy, Lithuania and Spain Type of participants: N= 21 CAYA cancer survivors N=20 HCPs N=13 care managers No data on gender reported. Number/percentage of CAYA cancer survivors: N=21 CAYA cancer survivors (38.89%) Age at primary cancer diagnosis: Not reported Follow-up time: Not reported Age at time of study: Not reported Type of cancer diagnosis: Not reported Profession: - Pediatric oncologist or haematologist: N=18 - Radiation oncologist: N=1 Primary outcome measure: Perceived barriers and facilitators to the implementation of the SurPass v2.0. Secondary outcome measure: Not applicable Care-related barriers according to HCPs/managers: - No national/regional LTFU care program - Childhood cancer not talked about openly in their country Care-related facilitators according to HCPs/managers: - A national/regional LTFU care program - Childhood cancer is talked about openly in their country Study design components Survey participants from the three different stakeholder categories were identified and invited by PanCareSurPass centre representatives. Not applicable Abbreviations: CAYA, childhood, adolescent, and young adult,; LTFU, long-term follow-up Keats et al. After Childhood Cancer: a Qualitative Study of Family Physician, Parent/Guardian, and Survivor Information Needs and Perspectives on Long-Term Follow-up and Survivorship Care Plans. J Cancer Educ, 2019, 34:638 - 646 Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To explore the individual needs, preferences, and perceived utility of a personalized, algorithm-driven, automatically generated SCP. Study design: Semi-structured telephone interviews with a purposefully selected sample of CAYA cancer survivors, parents/guardians, and Family Practitioners. Country of origin: Canada Type of participants: N=8 CAYA cancer survivors N=10 parents/guardians N=6 family practitioners Number/percentage of CAYA cancer survivors: N=8 CAYA cancer survivors (33.33%) Age at diagnosis: Mean = 9 (SD = 4.7), range 3 - 15 years Age at time of study: CAYA cancer survivors: mean = 23 years, (SD 5.6, range 14-29) Parents: mean = 52.2 years, (SD 6.2, range 4463) Follow-up time: Not reported Type of cancer diagnosis - Acute lymphoblastic leukemia: N=5 (62.5%) Primary outcome measure: Survivors/parents: (1) cancer care information needs, (2) concerns with or gaps in communication with their FP about their cancer care needs. (3) their perceived role of the FP in the long-term management and surveillance of CAYA cancer survivors (4) perceived utility of the SCP (5) preferred format of the SCP Family practitioners: (1) current practice and perceived role in the long-term management of CAYA cancer survivors (2) cancer information needs (3) concerns with communication (4) perceived utility of the SCP (5) preferred format of the SCP Perspectives on the needs, preferences, and perceived utility of an automatically generated, personalized SCP among: FPs: - A lack of information and/or sufficient knowledge with respect to pediatric cancer treatments, potential late-effects, and recommended guidelines for surveillance and follow-up testing - Perceived lack of patient communication, motivation to seek follow-up, and compliance CAYA cancer survivors: - Lack of confidence in the FP to meet the unique health care needs of CAYA cancer survivors FPs, CAYA cancer survivors and parents: - SCP as an informative and useful resource Study design components Semi-structured Interviews included both closedand openended questions and were conducted by a facilitator experienced in working with CAYA cancer survivors and their families. - Other: osteosarcoma, lymphoma, nephroblastoma, germinoma, and embryonal rhabdomyosarcoma No other information reported. Profession: Family practitioners Years of experience: Mean 26.3 (SD = 10.1) years (range 9 - 39 years) Secondary outcome measure: Suggestions for improvement Abbreviations: CAYA, childhood, adolescent, and young adult, FP, family physician, HCPs, healthcare professionals, SCP, survivorship care plan King et al. Clinician perceptions of Passport for Care, a web-based clinical decision support tool for survivorship care plan delivery. Pediatr Blood Cancer, 2023, 70:e30070. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To assess PFC clinician user practices and perceptions of PFC impact on clinic workflow, guidelines application and survivor shared decision-making. Study design: Descriptive survey Country of origin: United States of America Type of participants: N=148 clinicians representing 64 out of 146 PFC user clinics (gender not reported) Number/percentage of CAYA cancer survivors: Not applicable Age at primary cancer diagnosis: Not applicable Follow-up time: Not applicable Age at time of study: Not applicable Type of cancer diagnosis: Not applicable Profession: - 46 physicians (31%) - 42 advanced practice providers (28%) - 48 nurse or nurse coordinators (33%) - 12 Other (8%) Primary outcome measure: Clinic patterns and workflow, SCP user satisfaction and perceived impact on survivorship care delivery, user feedback and recommendation for future updates. Secondary outcome measure: Not applicable Barriers to providing SCP Clinic workflow integration: - 43% of the respondents indicated that it would take 30 minutes or more to input medical record data into the PFC to develop an SCP. - Respondents in clinics with a physician solely responsible for data entry were more likely to report data entry as a significant barrier, compared to when other clinic members did this task - Lack of time and resources for data entry as a barrier to enrolling additional patients Facilitators to providing SCP User satisfaction and perceived impact on survivorship care delivery: Availability of PFC and SCP had high impact on ability to provide survivors with comprehensive information and services that adhered to current guidelines. User feedback and recommendations for future updates: development of mobile health application to allow survivors to access and receive their SCP on their personal device. Study design components A 35-item anonymous survey emailed to all PFC users in 146 current and former PFC clinics. Results were summarised and compared with the same 2012 survey. Years of experience: Not reported Abbreviations: CAYA, childhood, adolescent, and young adult, PFC, Passport for Care, SCP, survivorship care plan Knighting et al. A study of childhood cancer survivors’ engagement with long-term follow-up care: “To attend or not to attend, that is the question”. Eur J Oncol Nurs, 2020, 45; 101728. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To explore CAYA cancer survivors’ views and experiences of LTFU care within a cancer centre. Study design: Mixed method, sequential, explanatory design Country of origin: United Kingdom Type of participants: N=113 CAYA cancer survivors questionnaire respondents (gender not reported) N=13 CAYA cancer survivors of those above were interviewed (46% female) Number/percentage of CAYA cancer survivors: N=113 CAYA cancer survivors (100%) Age at primary cancer diagnosis: Not reported Follow-up time: Not reported Age at time of study: - Questionnaire: mean age 30 years (range: 19-70) - Interviews: mean age (range: 21 -71) Type of cancer diagnosis: Primary outcome measure: Patients views and opinions of attending LTFU care and knowledge about their cancer treatment and ongoing provision of care. Secondary outcome measure: Not applicable Barriers to attending long-term follow-up care - The burden of travelling long distances to attend clinic visits - Coordinating appointments around work commitments - Co-morbidities which created difficulties and posed challenges in having to attend multiple appointments at different sites with different specialists - CAYA cancer survivors did not feel well informed regarding the rationale for attending LTFU clinic nor about the late effect risks they may face in the survivorship period Study design components Paper questionnaires (N=113) and qualitative semi-structured interviews (N=13) Questionnaire: - Leukemia: N=22 (20%) - Lymphoma: N=28 (25%) - Solid Tumor: N=53 (49%) - Other: N=7 (6%) Interview Participants: - Leukemia: N=2 (15%) - Lymphoma: N=4 (31%) - Solid Tumor: N=7 (54%) Profession: Not applicable Years of experience: Not applicable Abbreviations: CAYA, childhood, adolescent, and young adult, LTFU, long-term follow-up Mani et al. Primary Care Physician Perspectives on Caring for Adult Survivors of Hematologic Malignancies and Hematopoietic Cell Transplantation. Clin Lymphoma Myeloma Leuk 2019, 20(2):70-77. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To identify knowledge gaps and perceived barriers in the management of survivorship issues in the patient population. Study design: Cross-sectional survey Country of origin: United States of America Type of participants: N=86 PCPs (gender not reported) Number/percentage of CAYA cancer survivors: Not applicable Age at primary cancer diagnosis: Not reported Follow-up time: Not reported Age at time of study: Not reported Type of cancer diagnosis: Not reported Profession: Primary Care Physicians - Internal Medicine: N=60 (70%) - Family Medicine: N=21 (24%) - Medicine – Pediatrics: N=5 (6%) Years of experience: Primary outcome measure: The perceived barriers to delivery of care to hematologic malignancy survivors, resources available to care for cancer survivors, practices for care coordination with haematologist-oncologists, and preferred models of care delivery. Secondary outcome measure: The willingness of PCPs to provide routine medical care for patients with varying complexity of survivorship care needs. Barriers to providing care - Lack of resources to facilitate survivor care - Insufficient time - Patients unclear who to approach for health issues - Inadequate communication between HCPs Facilitators of providing care: - SCP and treatment summary - Guidelines - Structured follow-up plan Other results not relevant for this review. Study design components Web-based survey consisting of 40 questions, and 2 case scenarios administered to 2 large integrated health care systems. Response rate = 30%. Not reported, but years since medical school: - Median: 17 - Range: 1-47 Abbreviations: CAYA, childhood, adolescent, and young adult, HCPs, health care professional, PCPs, Primary Care Physicians, SCP, survivorship care plan Gramatges et al. Improving Childhood Cancer Survivor Care through Web-Based Platforms. Oncology, 2018, 32(1) Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To investigate the barriers to adherence, unique to CAYA cancer survivors and the rationale for distribution of a SCP. Study design: Quantitative survey Country of origin: United States of America Type of participants: N=213 CAYA cancer survivors N=315 CAYA cancer survivors parents No data on gender provided. Number/percentage of CAYA cancer survivors: N=213 CAYA cancer survivors (40%) Age at primary cancer diagnosis: Not reported Follow-up time: Interval from diagnosis to survey: - < 10 years: 70% - > 10 years: 30% Age at time of study: Not reported Type of cancer diagnosis: Not reported Profession: Not applicable Primary outcome measure: Barriers to LTFU care adherence. Secondary outcome measure: Not applicable Barriers to LTFU care adherence - Lack of knowledge on potential late effects - Busy schedule - Poor insurance coverage - Perception that follow-up is not necessary - Distance to clinic Study design components Survey administered through the PFC website. The survey consisted of 26 questions offered in Spanish or English. Signorelli et al. Childhood Cancer Survivorship: Barriers and Preferences. BMJ Support. Palliat. Care. 2019; 0: 1-9. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To characterise the nature and prevalence of patient-reported barriers to accessing LTFU care as well as to explore survivors’ and parents’ preferences for the delivery of survivorship care. Study design: Mixed methods study design. Country of origin: New Zealand Type of participants: N=251 AYA cancer survivors (52% female) N=195 older survivors (>25 years of age; 56% female). N=187 parents of survivors*: N=187 (86%) Number/percentage of CAYA cancer survivors: N=446 (73%) Age at primary cancer diagnosis: <16 years of age Follow-up time Interval from diagnosis to survey: - AYA CS: mean 14.3 years (range 5-24) - CS <16: 9.7 years (515) Age at time of study: Mean (range): - AYA CS: 20.6 years (16-23) Primary outcome measure: Barriers to LTFU care. Secondary outcome measure: Preferences for delivery of survivorship care. Barriers: Belief in LTFU Care (59%) - Lack of trust in health professionals - Low perceived control of cancer - Return to hospital brings negative memories/experiences - Low perceived risk of late effects/need for LTFU care - Survivors would rather continue with normal life Barriers: Financial (57%) - Loss of wages due to taking time to attend LTFU care - Costs of LTFU care too high Barriers: Logistical (65%) - Unable to travel without assistance - Reluctant to take valuable time off work/study - Survivors perceive appointments as inconvenient - Difficult to find childcare - No reminders to attend appointments Preferences related to follow-up care implementation - Survivors preferred attending LTFU care outside of normal hours which would improve attendance to allow travel at more convenient times. - Age-appropriate care models Study design components Participants completed questionnaires and optional in-depth interviews. - CS <16: 12.4 years (7-15) Type of cancer diagnosis - Leukemia: N=105 (46%) - Lymphoma: N=24 (10%) - Brain cancer: N=30 (13%) - Other: N=71 (31%) Profession: Not applicable Years of experience: Not applicable *Parents of survivors (<16) were included when the AYA survivor is less than 16 years of age. Their demographic data is reported, but clinical data is the child survivors (parent proxy) Abbreviations: CAYA, childhood, adolescent, and young adult, CS, cancer survivors, AYA, adolescent and young adult; HCPs, healthcare professionals; LTFU, long-term follow-up Signorelli et al. Models of Childhood Cancer Survivorship care in Australia and New Zealand: Strengths and Challenges. Asia Pac J Clin Oncol. 2017; 31;407-415 Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To report on challenges in LTFU care that clinics face, and current childhood cancer survivorship care in Australia and New Zealand. Study design: Qualitative study with semi-structured interviews. Country of origin: Australia and New Zealand. Type of participants: N=19 HCPs representing N=11 hospitals (gender not reported) Number/percentage of CAYA cancer survivors: Not applicable Age at primary cancer diagnosis: Not applicable Follow-up time: Not applicable Age at time of study: Not applicable Type of cancer diagnosis: Not applicable Profession: - Pediatric oncologists: N=9 (47%) - Clinical Nurse coordinator: N=10 (53%) Years of experience: Not reported Primary outcome measure: LTFU care challenges that clinics face. Secondary outcome measure: LTFU care strengths within in LTFU clinics. LTFU care challenges Insufficient funding - Lack of funding, but especially recurrent funding was a challenge making service planning difficult. - Lack of dedicated psychologist/social worker - Increased waiting lists due to understaffing and limited clinic space. - Lack of funding to support administrative staff and data management (inadequate databases/electronic records) Transition to care: inconsistent practices - Hospital policy mandating the care of pediatric patients only - Lack of formalised procedures for transition of care between childhood and adulthood - HCP’s lack appropriate knowledge around survivor education/empowerment - Improving survivors’ understanding the importance of LTFU might reduce disengagement from care Lack of resources for research - Clinics do not receive updates about survivors’ health, development of late effects or second cancers when discharged to their GP - Lack of collaborative efforts between research, clinical cares, and HCPs LTFU care strengths Study design components Semi-structured interviews with pediatric medical oncologists and clinical nurse consultants from 11 clinics following a structured interview guide. Clinic data was reported by LTFU Clinic (N=11), and HCP individual perspectives (N=19) was also reported. - Access to a multi-disciplinary team (including psychologists and fertility specialists) was a critical characteristic of LTFU care - Importance of welcome booklets, and treatment summaries to improve patient education and communications - Smaller patient numbers were perceived as more easily maintaining contact and attendance rates Abbreviations: CAYA, childhood, adolescent, and young adult, HCPs, healthcare professionals, GP, general practitioners, LTFU, long-term follow-up, Cheung et al. Identifying Priorities for Harmonizing Guidelines for the Long-Term Surveillance of Childhood Cancer Survivors in the Chinese Children Cancer Group (CCCG). JCO global oncology, 2021; Volume 7, Pages 261-276. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To identify highpriority late effects for harmonizing screening guidelines within the CCCG, as well as barriers and enablers of the implementation of surveillance recommendations in local practice. Study design: Delphi survey study and expert panel focus group discussion. Country of origin: China Type of participants: N=12 expert panel of representatives (pediatric oncologists or hematologists) from pediatric oncology institutions in Northern China, currently providing or planning to provide LTFU services Number/percentage of CAYA cancer survivors: Not applicable Age at primary cancer diagnosis: Not applicable Follow-up time: Not applicable Age at time of study: Not applicable Type of cancer diagnosis: Not applicable Profession: Pediatric oncologists and hematologists providing or planning to provide Primary outcome measure: High-priority late effects for harmonizing screening guidelines. Secondary outcome measure: Barriers and enablers of the implementation of surveillance recommendations in local practice. Barriers to implementing survivorship care programs: Clinician related - Lack of expertise - Lack of time CAYA cancer survivors related - Concerns about privacy issues - A lack of awareness of late effects - A failure to appreciate the importance of LTFU care - Fear of diagnosis with late effects - High default rates - Financial hardships (especially for CAYA cancer survivors living in rural areas) - Desire from family members to move on with life Infrastructure related - Lack of standardized guidance for monitoring late effects in cancer survivors - Lack of comprehensive medical records - Complex and difficult to navigate healthcare systems - Lack of access to a patient’s complete medical records and no existing infrastructure to help clinicians with the retrieval of patients’ medical information from other institutions - Limited resources - Lack of standardized guidelines - Limited subspecialty services (need to refer some patients to other tertiary institutions) - Lack of leadership support Study design components Descriptive statistics were used only. LTFU services at their institution: N=12 (100%) Years of experience: Not reported Abbreviations: CAYA, childhood, adolescent, and young adult; HCPs, healthcare professionals; LTFU, long-term follow-up; CCCG, Chinese Children’s Cancer Group Demoor-Goldschmidt et al. Long-term follow-up after childhood cancer in France supported by the SFCE—force and weakness—current state, results of a questionnaire and perspectives. Br J Radiol 2018; 91; 20170819 Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To describe LTFU care strengths and weaknesses and to establish appropriate steps that should be taken. Study design: Descriptive questionnaire study Country of origin: France Type of participants: N=54 HCPs from French centers/hospitals with a Pediatric oncology department (gender not reported) Number/percentage of CAYA cancer survivors: Not applicable Age at primary cancer diagnosis: Not applicable Follow-up time: Not applicable Age at time of study: Not applicable Type of cancer diagnosis: Not reported Profession: - Pediatric Oncologists: N=40 - Radiation oncologists: N=6 - Surgeons: N=6 - Other: N=2 Primary outcome measure: Experience with LTFU care in France in 2016. Secondary outcome measure: The differences that occurred in the last 10 years, the content and aims of follow-up, problems relating to LTFU, and what steps should be taken ideally to improve LTFU. Barriers to LTFU care - Lack of time to devote to LTFU (57%) - Difficulties contacting survivors (26%) - Cost of LTFU care (15%) - Survivors not showing up to consultation (19%) - Lack of organisation (13%) - Lack of information from the GP, physicians require extra education (no % provided) Study design components The questionnaire was made up of 3 parts and 30 questions: (a) identification of the physician and definition of LTFU (9 questions); (b) description of the traditional follow up just after treatment (2 questions); and (c) LTFU for CAYA cancer survivors (19 questions). Years of experience: Not reported Abbreviations: CAYA, childhood, adolescent, and young adult,; HCPs, healthcare professionals; LTFU, long-term follow-up; GP, general practitioner Howard et al. Healthcare system barriers to long-term follow-up for adult survivors of childhood cancer in British Columbia, Canada: a qualitative study. J Cancer Surviv, 2018, 12:277-290. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To investigate CAYA cancer survivors’- and HCPs’ perspectives of healthcare system factors that function as barriers to LTFU in British Columbia, Canada Study design: In-depth interviews with CAYA cancer survivors and HCPs. Country of origin: Canada Type of participants: N=30 CAYA cancer survivors (60% female) N=13 HCPs (gender not reported) Number/percentage of CAYA cancer survivors: N=30 CAYA cancer survivors Age at primary cancer diagnosis: - 0–4 years (27%) - 5–9 years (33%) - 10+ years (40%) Follow-up time: Interval from diagnosis to survey: - 10-14 years (2.3%) - 15-19 years (40.7%) - 20-24 years (33.3%) - ≥ 25 years (23.7%) No absolute numbers reported. Age at time of study: - 20-24 years (16%) - 25-29 years (27%) - 30-34 years (30%) - 35+ years (27%) Primary outcome measure: CAYA cancer survivors’ and HCPs’ perspectives of healthcare system factors that functioned as barriers to accessing comprehensive, quality LTFU. Secondary outcome measure: Any care at a cancer centre or with a primary care physician. Barriers to accessing comprehensive, quality LTFU care (1) The difficult and abrupt transition from pediatric to adult health services: abrupt change in HCP, adult system without sufficient preparation or support, uncertainty among CAYA cancer survivors about where to turn for help and whether healthcare needs were being looked after; no oversight of the transition process and no centralized ownership or responsibility for guiding survivors over time; developmental transition from adolescence to adulthood complicated by late effects; CAYA cancer survivors overwhelmed by the numerous different transitions to manage simultaneously (i.e. to work, financial independence, and to emotional and social independence); CAYA cancer survivors reliance on parent involvement in care. (2) Inconvenient and under-resourced healthcare services: decentralization of services resulting in a notable burden associated with money and time required for travelling to appointments; lack of HCP time; lack of physician specialists and family doctors; insufficient funding for appropriate LTFU care (3) Shifting patient-HCP relationships: adult HCP lack the necessary time to build quality relationships with CAYA cancer survivors compared to pediatric providers; lack of strong patient-provider relationship with family doctor (4) Family doctor inadequate experience with late effects management: inadequate knowledge among Study design components One investigator conducted in-depth interviews with CAYA cancer survivors, while two investigators conducted interviews with HCPs. Qualitative thematic analysis and constant comparative methods were used. No absolute numbers reported. Type of cancer diagnosis - Leukemia and lymphoma (53%) - Brain (20%) - Sarcoma (not including brain) (20%) - Other solid tumors (7%) No absolute numbers reported. Profession: - N=6 physicians (2 pediatric oncologists, 1 adult oncologist, 1 neuropsychiatrist, 1 cardiologist, and 1 family physician) - N=2 registered nurses - N=1 social worker - N=1 counselor - N=1 patient/parent advocate - N=2 healthcare administrators Years of experience: Not reported family doctors of the cancer history of individual patients, late effects screening and management guidelines (5) Overdue and insufficient late effects communication with CAYA cancer survivors: insufficient knowledge among CAYA cancer survivors of their cancer treatments and late effects risks Abbreviations: CAYA, childhood, adolescent, and young adult, HCPs, healthcare professionals, LTFU, long-term follow-up Baird et al. Understanding and Improving Survivorship Care for Adolescents and Young Adults with Cancer. J. Adolesc. Young Adult Oncol, 2019; 8(5): 581-586. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To explore and highlight the opportunities and challenges that underlie the development of survivorship care for adolescent and young adult cancer. Study design: Qualitative study including an online survey, focus group and semi-structured interviews. Country of origin: Australia Type of participants: Online surveys: N=101 stakeholders (N=75 HCPs, N=19 AYA cancer survivors, N=6 parents/carers, N=1 sibling). Sex not reported. Focus group: N=9 AYA cancer survivors (33% female) Interviews N=31 academics and HCPs, N=2 AYA cancer survivors, N=2 parents of focus group participants. Sex not reported. Number/percentage of AYA CS: N= 30 (21%). Age at primary cancer diagnosis: Not reported. Follow-up time: Not reported. Age at time of study: Primary outcome measure: Opportunities and challenges that underlie the development of survivorship care for AYA cancer. Secondary outcome measure: Not applicable Barriers - Limited funding (mentioned as most important barrier to providing comprehensive and responsive AYA survivorship care) - Only engaging GPs at the end of treatment, resulting in “problem dump” and leaving the GP unprepared - In appropriate education of GPs on AYA cancer - Infrequent use of treatment summaries and survivorship care plans due to time and resource constraints - Reduced trust in GPs due to prolonged and complex pathways to diagnosis, misdiagnosis and limited involvement during active cancer treatment - Current domination of the “silo” approach, wherein care is split between different clinicians and services - Slow evolving health system. Progress often fragmented and short-lived due to lack of formal processes and structures and lack of funding - Disparities in the availability and utilization of survivorship care initiatives (especially between states, cancer types and between pediatric and adult setting) Facilitators - Care should be tailored to each individual’s specific needs and preferences, and this should take into account the potential for needs to change over time - Providing targeted information for GPs Study design components Not applicable >18 years at focus group discussion. Age other studies not reported. Type of cancer diagnosis: Not reported Profession: HCPs participating in the interviews represented disciplines including oncology, general practice, nursing, social work, psychology, dietetics, exercise physiology, policy, and service delivery. Years of experience (if applicable). Not reported. - Provision of a treatment summary and survivorship care plan - Integration of treatment summaries and care plans in electronic health records - Good communication and coordination between HCPs, community services, and survivors (can be improved by use of treatment summaries and care plans) - Holistic approach to survivorship care (developmental instead of disease/site specific) Abbreviations: AYA, adolescent and young adult, CAYA, childhood, adolescent, and young adult, HCP, healthcare professional Ålykkja et al. Available, but not always accessible: A nationwide, qualitative study of multidisciplinary healthcare providers’ experiences with follow-up care after pediatric brain tumour. Eur J Cancer Care 2020; 30; e13375 Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To explore HCPs experience with providing LTFU care Study design: Qualitative study Country of origin: Norway Type of participants: N = 33 health care professionals (30 female) Number/percentage of CAYA cancer survivors: N=0 Age at primary cancer diagnosis: Not applicable Follow-up time: Not applicable Age at time of study: Not applicable Type of cancer diagnosis: Not applicable Profession: 10 consultants, 12 nurses, 2 social workers, 2 physiotherapists, 2 psychologists, 5 neuropsychologists. Years of experience - Consultant: mean 20 years (range 2-35) Primary outcome measure: HCP’s experiences and challenges in providing LTFU care. Secondary outcome measure: Suggestions for improvement. System barriers to providing optimal follow up care - Fragmented system - Barriers due to interaction and coordination between services - Poor timing of current follow-up care - Poor distribution of responsibilities - Lack of knowledge Suggestions for improving care: - Follow-up care nurses - Coordinating role - System and routines that ensure cooperation, communication, and shared responsibilities - Local resources - Transfer of knowledge Study design components Five focus-group interviews and five individual interviews were conducted. Focusgroup interviews and individual interviews were analysed using systematic text condensation. The semi-structured interview guide was based on the authors’ clinical experiences and existing literature concerning follow-up care. - Nurse: mean 17.5 years (range 8-38) - (Neuro) psychologist: mean 7 years (range 2-15) - Social worker: mean 18 years (range 1125) - Physiotherapist: mean 12.5 years (range 10-16) Abbreviations: CAYA, childhood, adolescent, and young adult, HCP, healthcare professional, LTFU, long-term follow-up Michel et al. Physicians’ experience with follow-up care of childhood cancer survivors – challenges and needs. Swiss Med. Wkly 2017; 147; w14457 Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To improve quality and efficiency of follow-up care a national follow=up care model including guidelines needs to be developed Study design: Cross-sectional survey Country of origin: Switzerland Type of participants: N = 183 HCPs (24% female) Number/percentage of CAYA cancer survivors: N=0 Age at primary cancer diagnosis: Not applicable Follow-up time: Not applicable Age at time of study: Not applicable Type of cancer diagnosis: All types of cancer except breast cancer Profession: - Medical oncologists: N=27 - Pediatric oncologists: N=13 - General practitioner: N=122 - Pediatricians: N=21 Years of experience Primary outcome measure: Suggestions for LTFU care. Secondary outcome measure: - Reasons for not engaging in follow-up care - Additional resources needed for optimal care - Content of follow-up care between different healthcare providers Problems encountered & reasons for not engaging in follow-up care - 74% of generalist stated that they were not aware of survivors needing follow up, pediatric (51%) or medical oncologists (50%) were taking care of these patients, 28% did not have enough experience to provide follow up care - 73% of oncologists believe that survivors did not understand the need for follow up, 91% reported problems with transitioning patients to adult care - Other problems include lack of time and financial resources (73%), lack of specialised nurses (64%), distance between home and clinic (18%) Additional resources needed for optimal care - 85%-91% reported the need for standardised protocols and guidelines, followed by 55-73% needed specific training, 91% required more financial resources - 94% of GPs and 100% of pediatricians would appreciate support from the treating oncologist and 98% of GPs and 100% of pediatricians a referral report from the oncologists Study design components Adapted questionnaires with the following (1) involvement in, (2) content of, (3) problems with, (4) needs for optimal follow up care of childhood cancer survivors. Mean time since specialization: 20.1 years (range 1-52 years) Abbreviations: CAYA, childhood, adolescent, and young adult, HCP, healthcare professional Signorelli et al. The Role of Primary Care Physicians in Childhood Cancer Survivorship Care. Oncologist 2019; 24; 710-719 Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To evaluate the roles of PCPs and confidence in them providing follow-up care to survivors of childhood cancer Study design: Semi-structured interviews Country of origin: Australia Type of participants: N=57 CAYA cancer survivors (64% female) N=63 parents of CAYA cancer survivors (42% female) N=74 PCPs (sex not reported) Number/percentage of CAYA cancer survivors: N=57 Age at primary cancer diagnosis: Before 16 years of age. Age at time of study: Mean age of survivor in years 25.6 (SD = 6.2) Mean age of survivor in years (parent reported): 12.7 (SD = 2.0) Types of cancer diagnosis Leukemia, lymphoma, brain tumor, and other Profession: PCP (100%) Primary outcome measure: Reasons for (not) accessing PCP-Led LTFU care. Secondary outcome measure: PCPs’ reported needs for providing survivorship care and their perceived confidence in delivering care to CAYA cancer survivors. Reasons for (not) accessing PCP-led care - Low received PCP knowledge about their history and survivorship needs - PCPs uninformed about cancer history - Lack of specialist care - Reliance on oncologist - Irregular PCP - PCPs better for noncancer care - PCPs disconnected after diagnosis - PCPs too busy - Feeling “lost” in the system Barriers to LTFU attendance: aversion to doctors, perceiving PCPs as too busy for their complex needs, out-of-pocket expenses. Facilitator: earlier involvement of PCPs. PCPs’ perspectives of their role in childhood cancer survivorship care - Unmet information needs - Prescriptive instructions - Preferred mode of communication - PCPs disconnected - Clarification roles - Confidence with adult cancers rather than child cancers - Important that the oncology team educates survivors and equips them as advocates for their health as they traverse the adult health care system Study design components: Stage 1: Survivors and parents of young survivors completed interviews about their PCPs role in follow-up care. Stage 2: Participants nominated their PCP for an interview about their confidence and preparedness in delivering childhood cancer survivorship care. Years of experience Mean 28.3 years (range 8-60) Abbreviations: CAYA, childhood, adolescent, and young adult, LTFU, long-term follow-up, PCPs, primary care providers, SD, standard deviation Christen et al. Perceived information provision and information needs in adolescent and young adult cancer survivors. Eur J Cancer Care 2018; 28; e12892 Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To (a) describe the information CAYA cancer survivors reported to have received, (b) identify current information needs and survivors’ preferred format of communication, and (c) examine associations between information needs and cancer-related/ socio-demographic characteristics, psychological distress and healthrelated quality of life Study design: Qualitative cohort study Country of origin: Switzerland Type of participants: N=160 survivors (38.7% female) Number/percentage of CAYA cancer survivors: N=160 (100%) Age at primary cancer diagnosis: Mean age 21.6 years (SD = 2.9) Follow-up time: Mean time since diagnosis: 12.4 years (SD = 4.8) Age at time of study: Mean age 34.0 years (SD = 5.8) Type of cancer diagnosis: - Leukemia/Lymphoma: N=73 (45.6%) - Germ cell tumour: N=46 (28.7%) - CNS tumour: N=15 (9.4%) - Other tumour: (neuroblastoma, renal tumour, hepatic tumour, bone tumour Primary outcome measure: Information needs in adolescent and young adult cancer survivors. Secondary outcome measure: Perceived information provision in LTFU. Information needs - Many survivors did not remember ever having received information on late effects - Information on follow-up and late effects should be provided at different points of the cancer trajectory, notably at end of treatment - Especially in younger survivors, late effect/survivorship plan is given to parents, and children are at an information loss - Memory for medical information may be affected by the perceived importance of the information Study design components Survivors received a questionnaire on information received and current information needs, socio-demographic information, psychological distress and Health Related Quality of Life. Survivors were asked whether they received information from a medical doctor or health professional about the original disease, treatment, follow-up, late effects, and other information. or soft tissue sarcoma): N=26 (16.3%) Profession: Not applicable Years of experience: Not applicable Abbreviations: CAYA, childhood, adolescent, and young adult, CNS, central nervous system, LTFU, long-term follow-up, SD, standard deviation Mobley et al. Insurance coverage change and survivorship care among young adult survivors of childhood cancer. Health Serv Res. 2021;1–13. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To (1) characterize change in type of insurance coverage among childhood cancer survivors from diagnosis to survivorship and (2) examine whether insurance change is associated with cancer-related follow-up care utilization. Study design: Observational questionnaire study Country of origin: United States of America Type of participants: N= 1,106 CAYA cancer survivors (46% female) Number/percentage of CAYA cancer survivors: N=1,106 CAYA cancer survivors (100%) Age at primary cancer diagnosis: Not reported Follow-up time: Not reported Age at time of study: - 18-26 years: N=635 (58%) - 27-39 years: N=471 (42%) Type of cancer diagnosis: - Leukemia: N= 395 (36%) - Lymphoma: N= 241 (22%) - Brain or central nervous system: N= 153 (14%) Primary outcome measure: Insurance change, which was derived based on any change in the type of insurance coverage from diagnosis to survivorship. Secondary outcome measure: Utilization of cancer-related follow-up care during the prior 2 years. Association between insurance change and receipt of cancer-related follow-up care The multivariable logit regression results indicated the association between utilization of cancer-related follow-up care in the prior 2 years, taking into consideration insurance change and holding each independent variable constant. CAYA cancer survivors who experienced any insurance change were less likely to report receipt of cancer related follow-up care in comparison to those with stable coverage (a 5 ppt decline (SE 0.02, p < .05) for those who gained coverage and 15 ppt decline (SE 0.04, p < .001) for those who lost coverage). CAYA cancer survivors who were publicly covered (in comparison to those who were privately insured) were more likely to have a cancer-related follow-up care visit by 5 ppt (SE 0.02, p < .01). Study design components Participants in this study were derived from the Project Forward study, a population-based, observational study of childhood cancer survivors in Los Angeles County that used California Cancer Registry data to identify participants. Multivariable logistic regression models incorporating survey nonresponse weights estimated the change in the marginal predicted probabilities of insurance change and survivorship care, adjusting for demographic, socioeconomic, and clinical covariates and clustering by treating hospital. - Neuro., retino., renal, hep., germ cell: N=119 (11%) - Bone or sarcoma: N= 96 (9%) - Other carcinoma: N=102 (9%) Profession: Not applicable Years of experience: Not applicable Abbreviations: CAYA, childhood, adolescent, and young adult, SE, standard error Noyd et al. Rural, large town, and urban differences in optimal subspecialty follow-up and survivorship care plan documentation among childhood cancer survivors. Cancer Epidemiol Biomarkers Prev 2023;32:634–41 Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To assess the impact of rurality on suboptimal subspecialty followup during the early survivorship period. Study design: Cohort study Country of origin: United States of America Type of participants: N= 449 CAYA cancer survivors - 43.9% female with optimal follow-up (N=355) - 42.6% female with no optimal followup (N=94) Number/percentage of CAYA cancer survivors: N=449 CAYA cancer survivors (100%) Age at primary cancer diagnosis: Only given per groups: - Optimal follow-up: 6.5 years, 95% CI (0.26; 6.0–7.0) - No optimal followup: 10.2 years (0.64; 8.9–11.5) Follow-up time: Not reported Age at time of study: Not reported Type of cancer diagnosis: Primary outcome measure: Suboptimal follow-up defined as no completed oncologyrelated clinic visit five to 7 years after initial diagnosis. Secondary outcome measure: The association between rurality and the documentation of a survivorship care plan. Association between rurality and having a Passport for Care Large town vs. urban: RR = 1.70, 95% CI (1.28–2.27) Small town/Isolated rural vs. urban: RR = 1.49, 95% CI (1.10–2.01) Univariate analyses are reported in the paper but not in this table. Study design components To collect data, authors integrated a cancer registry, electronic health records, and geospatial data. Only reported per group. Optimal follow-up: - Leukemia: N=152 (42.8%) - Non-Hodgkins Lymphoma: N= 19 (5.4%) - Hodgkins Lymphoma: N= 22 (6.2%) - CNS: N=62 (17.5%) - Retinoblastoma: N= 2 (0.6%) - Bone: N= 14 (3.9%) - Neuroblastoma: N=17 (4.8%) - Wilms: N= 28 (7.9%) - Sarcoma: N=10 (2.8%) - Other: N=29 (8.2%) No optimal follow-up: - Leukemia: N=22 (23.4%) - Non-Hodgkins Lymphoma: N= 9 (9.6%) - Hodgkins Lymphoma: N= 19 (20.2%) - CNS: N=15 (16.0%) - Retinoblastoma: N= 1 (1.1%) - Bone: N= 5 (5.3%) - Neuroblastoma: N=1 (1.1%) - Wilms: N= 7 (7.4%) - Sarcoma: N= 1 (1.1%) - Other: N=14 (14.9%) Profession: Not applicable Years of experience: Not applicable Abbreviations: CAYA, childhood, adolescent, and young adult, CI, confidence interval, RR, risk ratio Cousineau et al. Insurance Coverage, and Having a Regular Provider, and Utilization of Cancer Follow-up and Noncancer Health Care Among Childhood Cancer Survivors. INQUIRY-J HEALTH CAR, 2019, 56: 1–8. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To assess the role of health insurance coverage on patterns of health care utilization and access to cancerrelated follow-up and non-cancer care among childhood cancer survivors. Study design: Cross sectional survey design Country of origin: United States of America Type of participants: N= 235 CAYA cancer survivors (49.4% female) Number/percentage of CAYA cancer survivors: N= 235 (100%). Age at primary cancer diagnosis: Not reported Follow-up time: Not reported Age at time of study: - <21 years: N=141 (60.0%) - 21-25 years: N=94 (40.0%) Type of cancer diagnosis: All but Hodgkin lymphoma. Profession: Not applicable Years of experience: Not applicable Primary outcome measure: Access to care and care utilization, measured using selfreported outcome measures: - Regular source of care for cancer FU and non-cancer related care - Use of primary care physician, use of cancerspecialist and use of hospital emergency department Secondary outcome measure: Health insurance coverage. Associations between insurance and cancer follow-up care No regular provider for cancer care (private/other insurance = ref.) - Public insurance: OR = 0.9, 95% CI (0.4-2.3) - Uninsured/Unknown: OR = 4.3, 95% CI (1.9-9.4) No cancer specialist visit in the past 2 years (private/other insurance = ref.) - Public insurance: OR = 1.3, 95% CI (0.6-2.9) - Uninsured/Unknown: OR = 4.5, 95% CI (2.1-9.5) Significance indicated by CIs. Other results for noncancer care outcomes reported in the paper but not in this table. All models were adjusted for age, gender, ethnicity (Latino), socioeconomic status, and treatment Intensity. Study design components The data used in this study are from the Project Forward pilot study. A survey in English and Spanish was mailed to a cohort of CAYA cancer survivors diagnosed with any type of cancer (except Hodgkin lymphoma) between 2000 and 2007 from 2 large pediatric medical centers in Los Angeles County. Patients with Hodgkin lymphoma were excluded because they were included in another registry study, and cancer registry policies prohibit enrollment of cases in more than one study per year to reduce participant burden. Abbreviations: CAYA, childhood, adolescent, and young adult, CI, confidence interval, FU, follow-up, OR, odds ratio Breij et al. Healthcare providers' expected barriers and facilitators to the implementation of person-centered long-term follow-up care for childhood cancer survivors: A PanCareFollowUp study. Cancer Medicine, 2024;13:e70225. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To explore expected barriers and facilitators for establishing followup care among healthcare providers from four European LTFU clinics. Study design: Semi-structured focus group study Country of origin: Belgium, the Czech Republic, Sweden and Italy. Type of participants: N= 30 HCPs (66.7% female) Number/percentage of CAYA cancer survivors: Not applicable Age at primary cancer diagnosis: Not applicable Follow-up time: Not applicable Age at time of study: Not applicable Type of cancer diagnosis: Not applicable Profession: - Medical Doctor: n=19 (65.5%) - Nurse: n=5 (17.2%) - Other healthcare professions (pediatric oncology counselor, psychologist, physiotherapist): n=5 (17.2%) Primary outcome measure: Potential barriers and facilitators for the implementation of the PanCare FollowUp Care intervention. Secondary outcome measure: Not applicable. Expected barriers and facilitators to follow-up care Barriers below were mentioned during at least two of the four focus group interviews. - Possibly not feasible for survivors living far away - Lack of knowledge on late effects among GPs - Lack of skills regarding late effects among HCPs outside LTFU care team - Survivor no shows - Low trust in GPs and local care clinics - Lack of collaboration with psychosocial care facilities - HCPs uncertain about availability of environmental support for survivors - Lack of time - Lack of capacity to treat both acute cancer patients and survivors - Lack of healthcare staff - Lack of staff and follow-up facilities in the future - Lack of (access to) psychosocial care facilities - Lack of shared electronic systems to exchange medical information - Lack of available medical information to prepare treatment summary - Organizational issues with planning multiple examinations on same day - Lack of a psychosocial care pathway - Convincing hospital managers to allocate resources for LTFU care is a time-consuming process - Lack of financial resources Study design components A qualitative study was performed using semistructured focus groups with HCPs to explore potential barriers and facilitators for the implementation of the PCFU Care intervention. Data from focus group interviews were audio-recorded, anonymized, transcribed verbatim, and the Italian focus group was translated into English. Three researchers coded each transcript independently. Discrepancies were discussed until a consensus was reached. A thematic analysis was performed. - Unknown: n=1 (3.3%) Years of experience: - Working experience, (years mean ± SD): 23.8 ± 11.7 - Working experience in long-term followup care (years mean ± SD): 18.1 ± 12.7 - Number of survivors seen per month during consultations: 42.6 ± 45.4 - Lack of sufficient financial resources for survivors Facilitators below were mentioned during at least two of the four focus group interviews. - Uniform and consistent structure for LTFU care - Knowledge about LTFU care including harmonized guidelines - Knowledge and awareness about LTFU care among important stakeholders - Skilled GPs and local care facilities for LTFU care - High intrinsic motivation of HCPs to take care of survivors - Motivated HCPs to convince stakeholders for LTFU care - Awareness among survivors on importance LTFU care - Collaborating with HCPs from different disciplines required for LTFU care, GPs, local healthcare facilities, and psychosocial care facilities - (Inter-) national network for LTFU care strengthens argumentation for LTFU care - (Intelligent) IT system that is sharable between different care facilities - International consortium to convince stakeholders on institutional and national level to allocate resources for LTFU care - Understanding of hospital management - Reported results of LTFU care - Continuous financial support and commitment - Financial aid for survivors to participate in LTFU care (e.g., reimbursement for survivors living far away) Abbreviations: CAYA, childhood, adolescent, and young adult, GP, general practitioner, HCP, healthcare provider, LTFU, long-term follow-up, SD, standard deviation Cai et al. Accessibility of and Barriers to Long-Term Follow-Up Care for Childhood Cancer Survivors. JAMA Network Open. 2024;7(10):e2440258. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To understand the clinician and caregiver perceptions of LTFU care and to identify barriers to adherence to LTFU care in mainland China. Study design: 2-phase sequential mixed methods study consisting of a cross-sectional survey followed by semi-structured interviews Country of origin: China Type of participants: N= 101 HCPs (72.3% female) Number/percentage of CAYA cancer survivors: Not applicable Age at primary cancer diagnosis: Not applicable Follow-up time: Not applicable Age at time of study: Not applicable Type of cancer diagnosis: Not applicable Profession: - Pediatric oncologists: n=58 (57.4%) - Pediatric hematologists: n=26 (25.7%) - Missing: n=17 (16.8%) Years of experience: Primary outcome measure: The accessibility of and barriers of and facilitators to LTFU care. Secondary outcome measure: Not applicable. Barriers to follow-up care - Lack of process to match and communicate with adult health care practitioners - Lack of a system to obtain feedback from young adults about care transitions - Uncertainty about the transition process - Limited clinical knowledge - Unsure which guidelines to use - No financial support for the LTFU program operations in the last 5 years - No philanthropic funding for salaries in the last 5 years - No database to track survivor health outcomes - Patient-related factors (e.g., geographical accessibility and cost) - Survivor knowledge deficits about the importance of LTFU care Study design components Data obtained from the quantitative study was used to construct semi structured individual Interviews (approximately 20 minutes each) aimed at further exploring clinician and caregiver perceptions of how LTFU care is currently implemented in China and enhancing understanding of their needs for LTFU care. Not reported Abbreviations: CAYA, childhood, adolescent, and young adult, HCP, healthcare provider, LTFU, long-term follow-up Noyd et al. Integration of cancer registry and electronic health record data to construct a childhood cancer survivorship cohort, facilitate risk stratification for late effects, and assess appropriate follow-up care. Pediatr Blood Cancer. 2021, 68: e29014. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To harness an institutional cancer registry to construct a childhood cancer survivorship cohort, integrate EHR and geospatial data to analyze follow-up care patterns, and determine factors associated with suboptimal follow-up care with the goal to re-engage survivors at high risk for late effects. Study design: Retrospective cohort study Country of origin: United States of America Type of participants: N=865 CAYA cancer survivors (gender not reported) Number/percentage of CAYA cancer survivors: N=865 CAYA cancer survivors (100%) Age at primary cancer diagnosis: Only reported per group. Seen in clinic 5–7 years after initial diagnosis: Mean 7.27 years (SD 5.30) Not seen in clinic 5–7 years after initial diagnosis: Mean 8.35 years (SD 6.20) Follow-up time: Not reported Age at time of study: Not reported Type of cancer diagnosis: - Leukemia: N=225 (26.0%) Primary outcome measure: The association between follow-up and late-effect risk stratification. Secondary outcome measure: Not applicable Adjusted multivariable logistic regression modeling for association between late-effect risk strata and odds of subspecialty follow-up care 5–7 years after initial diagnosis: PHO survivorship cohort - High vs. intermediate: OR=1.39, 95% CI (0.771, 2.51) - Intermediate vs. low: OR=1.23, 95% CI (0.644, 2.36) - High vs. low: OR=1.72, 95% CI (0.805, 3.66) There was insufficient evidence to suggest there is an association between risk strata and follow-up care (p = NS). PNO survivorship cohort - High vs. intermediate: OR = 3.66, 95% CI (1.76, 7.61), p <.001 Here, the association between risk stratification and follow-up care with the odds of subspecialty follow-up for survivors at high risk for late effects 3.6 times that of survivors in the intermediate-risk strata. Models were adjusted for gender, age at diagnosis, race/ethnicity, ADI, RUCA, distance to medical center, and state of residence. Study design components: The analysis was restricted to individuals age 26 years or older at the time of survey, the age at which young adults are no longer eligible for coverage under their parents’ private health insurance plans postAffordable Care Act. - Non-Hodgkin lymphoma: N=58 (6.69%) - Hodgkin lymphoma: N=35 (4.05%) - CNS: N=275 (31.79%) - Neuroblastoma: N=42 (4.86%) - Retinoblastoma: N=40 (4.62%) - Bone tumors: N= 39 (4.51%) - Wilms’ tumor: N= 36 (4.16%) - Soft-tissue sarcoma: N=24 (2.77%) - Other: N=91 (10.51%) Profession: Not applicable Years of experience: Not applicable Abbreviations: ADI, area deprivation index, CAYA, childhood, adolescent, and young adult, CI, confidence interval, OR, odds ratio, PHO, pediatric hematology-oncology, PNO, pediatric neuro-oncology, RUCA, rural–urban commuting area Ernst et al. A Mixed-Methods Investigation of Medical Follow-Up in Long-Term Childhood Cancer Survivors: What Are the Reasons for Non-Attendance? Front. Psychol. 2022. 13:846671. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To provide insight into German survivors’ care situation, with a particular focus on barriers to follow-up care. Study design: Data from a standardized medical examination, a selfreport questionnaire, and in-depth interviews with a subsample. Country of origin: Germany Type of participants: N=633 CAYA cancer survivors (44.4% female) Number/percentage of CAYA cancer survivors: N=633 CAYA cancer survivors (100%) Age at primary cancer diagnosis: Mean age 6.34 years (SD 4.38) Follow-up time: Mean time since cancer diagnosis: 28.07 years (SD 3.21). Age at time of study: - 20–29 years: N=149 (23.5%) - 30–39 years: N= 359 (56.7%) - 40–49 years: N=125 (19.7%) Type of cancer diagnosis: - Leukemias: N=267 (42.2%) Primary outcome measure: Statistical predictors of medical follow-up attendance. Secondary outcome measure: Reasons for not attending follow-up care. Factors associated with follow-up attendance Type of diagnosis (leukemias = ref) - Central nervous system tumors: OR = 0.87, 95% CI (0.46-1.69), p = 0.62 - Lymphomas: OR = 0.93, 95% CI (0.61-1.42), p = 0.83 - Others: OR = 1.00, 95% CI (0.53-1.81), p = 0.99 Gender (no ref.): OR = 1.43, 95% CI (0.98-1.90), p = 0.055 Age at examination (in decades, no ref): OR = 1.44, 95% CI (1.02-2.03), p = 0.040 Time since cancer diagnosis (in decades, no ref): OR = 0.94, 95% CI (0.68-1.29), p = 0.68 Level of education (no ref.): OR = 0.73, 95% CI (0.50-1.07), p = 0.09 Presence of physical illness (no ref.): OR = 1.30, 95% CI (0.85-1.96), p = 0.34 Reasons for non-attendance (from qualitative analyses): - Lack of information about medical follow-up and/or its purpose - Termination by the health care provider - Structural barriers (i.e. distance) - Emotional-motivational aspects (i.e. such as fear of the detection of a medical problem) Study design components Mixed-methods study. - Central nervous system tumors: N=84 (13.3%) - Lymphomas: N=64 (10.1%) - Others: N=218 (34.4%) Profession: Not applicable Years of experience: Not applicable Abbreviations: CAYA, childhood, adolescent, and young adult, CI, confidence interval, OR, odds ratio, SD, standard deviation Signorelli et al. Childhood Cancer Survivors’ Reported Late Effects, Motivations for Seeking Survivorship Care, and Patterns of Attendance. Oncologist, 2023, 28, e276– e286. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To identify factors that were associated with late effects burden and engagement in cancer survivorship care. Study design: Cross-sectional observational questionnaire design Country of origin: Australia & New Zealand Type of participants: N= 634 CAYA cancer survivors (51.7% female) Number/percentage of CAYA cancer survivors: N=634 CAYA cancer survivors (100%) Age at primary cancer diagnosis: Not reported Follow-up time: Years since diagnosis: mean 15.9 (SD 7.9), range 5-59 Age at time of study: Mean age 21.7 (SD 8.9), range 7-61 Type of cancer diagnosis: - Leukemia: N=278 (44.2%) - Lymphoma: N=76 (12.1%) - Brain tumor: N=67 (10.7%) - Sarcoma: N=67 (10.7%) Primary outcome measure: Clinical and demographic factors associated with engagement in survivorship care. Secondary outcome measure: Not applicable Clinical and demographic factors associated with engagement in survivorship care Male survivors OR = 1.165, 95% CI (0.776, 1.748), p = .461 Age (continuous) OR = 0.904, 95% CI (0.879, 0.929), p < .001 Currently married/de facto (yes vs. no) OR = 1.366, 95% CI (0.837, 2.230), p = .212 Area of residence (major city vs regional/rural) OR = 0.785, 95% CI (0.491, 1.256), p = .312 Income (<$60,000 AUD vs ≥$60,000 AUD) OR = 1.117, 95% CI (0.686, 1.819), p = .658 Private health insurance (yes vs. no) OR = 0.847, 95% CI (0.546, 1.314), p = .458 Post-school education level (vs. high school only) OR = 0.857, 95% CI (0.547, 1.342), p = .499 Currently employed (yes vs. no) OR = 0.917, 95% CI (0.555, 1.516), p = .735 Diagnosis (leukemia = ref.) - Lymphoma: OR = 1.003, 95% CI (0.371, 2.714), p = 0.995 - Brain tumor: OR = 0.584, 95% CI (0.210, 1.627), p = 0.304 Study design components This study forms a part of a larger project; the Australian and New Zealand Children’s Haematology/Oncology Group Survivorship Study. - Wilms’ tumor: N=43 (6.7%) - Neuroblastoma: N=39 (5.7%) - Other cancer diagnoses: N=59 (9.3%) Profession: Not applicable Years of experience: Not applicable - Sarcoma: OR = 0.808, 95% CI (0.293, 2.226), p = 0.680 - Wilms’ tumor: OR = 1.596, 95% CI (0.465, 5.485), p = 0.458 - Neuroblastoma: OR = 1.215, 95% CI (0.445, 3.321), p = 0.704 - Other cancers: OR = 1.301, 95% CI (0.406, 4.161), p = 0.658 Treatment(s) received - Surgery: OR = 0.660, 95% CI (0.311, 1.402), p = 0.280 - Chemotherapy: OR = 3.032, 95% CI (0.931, 9.871), p = 0.066 - Radiation: OR = 1.201, 95% CI (0.684, 2.109), p = 0.523 - Bone marrow/stem cell transplant: OR = 1.831, 95% CI (0.882, 3.803), p = 0.105 Treatment intensity (rating 1 [least intensive] = ref.) - Rating 2: OR = 0.603, 95% CI (0.136, 2.667), p = 0.505 - Rating 3: OR = 0.830, 95% CI (0.373, 1.844), p = 0.647 - Rating 4 (most intensive): OR = 0.501, 95% CI (0.239, 1.047), p = 0.066 Years since diagnosis (continuous) OR = 0.911, 95% CI (0.877, 0.946), p < 0.001 Total number of late effects (continuous) OR = 0.979, 95% CI (0.910, 1.054), p = 0.576 Total number of motivators for engaging in survivorship care (continuous) OR = 1.101, 95% CI (1.018, 1.192), p = 0.016 Abbreviations: CAYA, childhood, adolescent, and young adult, CI, confidence interval, LTFU, long-term follow-up, OR, odds ratio, SD, standard deviation Milam et al. Project Forward: A population-based Cohort Among Young Adult Survivors of Childhood Cancers. JNCI Cancer Spectr 2021; 5(5); pkab068 Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To assess the prevalence of clinical, demographic, psychosocial, and care-related factors as well as their associations with receipt of cancerrelated follow-up care among CAYA cancer survivors. Study design: Self-reported questionnaire Country of origin: United States of America Type of participants: N= 1,166 CAYA cancer survivors (50.1% female) Number/percentage of CAYA cancer survivors: N=1,166 CAYA cancer survivors (100%) Age at primary cancer diagnosis: - 0-4 years: N=142 (43.25) - 5-9 years: N= 217 (43.65) - 10-14 years: N=342 (48.75%) - 15-19 years: N=442 (44.55%) Mean age 11.6 (SD = 5.4) years at diagnosis. Follow-up time: Years since diagnosis: - 5-9 years: N=296 (45.3%) - 10-14 years: N=391 (44.9%) - 15-22 years: N=479 (44.9%) Age at time of study: Primary outcome measure: Receipt of cancer-related follow-up care (within prior 2 years). (1=yes, 0=no). This was obtained via self-report and defined as any health-care visit where a provider completed an examination or tests to assess health problems from prior cancer or the cancer treatment they received, similar to an item used in the Childhood Cancer Survivor Study. Participants also indicated the type of health-care provider seen for this care. Secondary outcome measure: Not applicable Associations with receipt of cancer-related follow-up care (within prior 2 years) Years since diagnosis OR = 0.88, 95% CI (0.84 to 0.92), p <.001 Age at survey completion (18-20 years=ref), - 21-25 years: OR=0.65, 95% CI (0.50 to 0.85), p =.002 - 26-30 years: OR=0.32, 95% CI (0.22 to 0.48), p <.001 - 31-39 years: OR=0.35, 95% CI (0.24 to 0.50), p <.001 Female (vs male) OR = 1.16, 95% CI (0.86 to 1.58), p = .34 Race and ethnicity (non-Hispanic White = ref.) - Hispanic: OR = 0.69, 95% CI (0.51 to 0.95), p = .02 - Asian: OR = 0.83, 95% CI (0.52 to 1.31), p = .42 - Other: OR = 0.69, 95% CI (0.48 to 0.99), p = .04 Socioeconomic status (lowest group=ref.) - Low: OR = 0.92, 95% CI (0.66 to 1.26), p = .59 - Medium: OR = 1.12, 95% CI (0.76 to 1.65), p = .56 - High: OR = 1.01, 95% CI (0.67 to 1.52), p = .97 - Highest: OR = 0.93, 95% CI (0.62 to 1.39), p = .73 Number of late effects (none=ref.) - 1: OR = 1.41, 95% CI (1.08 to 1.83), p = .01 - ≥2: OR = 1.54, 95% CI (1.23 to 1.92), p < .001 Study design components Eligible CAYA cancer survivors identified through the Los Angeles County Cancer Surveillance Program responded to a selfreport survey that assessed demographic, clinical, health-care engagement, and psychosocial risk factors of recent FU Care. - 18-20 years: N= 240 (43.3%) - 21-25 years: N=427 (44.3%) - 26-30 years: N=318 (48.0%) - 31-39 years: N=181 (44.2%) Mean age 26.2 (SD = 4.9) years. Type of cancer diagnosis: - Lymphoma: N=244 (48.7%) - Leukemia: N= 407 (45.9%) - Brain and other nervous system: N=183 (41.3%) - Endocrine system: N= 68 (46.26%) - Skin: N=45 (42.86%) - Other (oral cavity and pharynx, digestive system, respiratory system, soft tissue including heart, urinary system, eye and orbit, and miscellaneous): N=219 (42.9%) Profession: Not applicable Years of experience: Treatment intensity OR = 1.18, 95% CI (0.92 to 1.52), p = .20 Received written cancer treatment summary OR = 1.47, 95% CI (1.16 to 1.87), p = .002 Has doctor for regular (non-cancer) health checkups OR = 1.47, 95% CI (1.13 to 1.92), p = .005 Discussed cancer-related follow-up care needs with a doctor (in the last 2 years) OR = 1.95, 95% CI (1.49 to 2.55), p < .001 Knowledge of the need for lifelong follow-up care OR = 3.57, 95% CI (2.90 to 4.39), p < .001 Health-care self-efficacy OR = 1.23, 95% CI (1.09 to 1.39), p < .001 Family influence health-care decisions OR = 0.90, 95% CI (0.59 to 1.38), p = .63 Not applicable Abbreviations: CAYA, childhood, adolescent, and young adult, CI, confidence interval, OR, odds ratio Ou et al. An investigation of survivorship clinic attendance among childhood cancer survivors living in a five-state rural region. J Cancer Surviv, 2018, 12:196–205 Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To examine how demographic, clinical, and geographic-based characteristics are associated with attendance at the only pediatric survivorship clinic in a largely rural, multistate region. Study design: Retrospective cohort study Country of origin: United States of America Type of participants: N= 1,816 CAYA cancer survivors (44.4% female) Number/percentage of CAYA cancer survivors: N=1,816 CAYA cancer survivors (100%) Age at primary cancer diagnosis: - 0 to 4 years: N=564 (31.1%) - 5 to 10 years: N=360 (19.8%) - 11 to 17 years: N=463 (25.5%) - 18 to 25 years: N=429 (23.6%) Follow-up time: Time since diagnosis: - 5 years or less: N=136 (7.5%) - 6 to 10 years: N=632 (34.8%) - 11 to 15 years: N=459 (25.3%) - 16 or more years: N=589 (32.4%) Age at time of study: Primary outcome measure: Follow-up attendance (attenders visited the clinic at least once). Secondary outcome measure: Residential addresses for participants. Associations between factors and follow-up clinic attendance If not indicated otherwise, p-value was NS. Age at Diagnosis Model 1: Distance Gender (female = ref.) Male: HR = 0.78, 95% CI (0.53–1.15) Ethnicity (Hispanic = ref.) Non-Hispanic: HR = 0.82, 95% CI (0.41–1.66) Type of cancer (central nervous system tumors = ref.) - Leukemia and lymphoma: HR = 3.32, 95% CI (1.72–6.78), p < .05 - Solid tumors: HR = 2.55, 95% CI (1.19–5.47), p < .05 Age at diagnosis (0 to 4 years = ref.) - 5-10 years: HR = 1.12, 95% CI (0.59–2.13) - 11-17 years: HR = 0.87, 95% CI (0.50–1.52) - 18-25 years: HR = 0.15, 95% CI (0.05–0.42), p < .05 Previous relapse (no relapse = ref.) Relapse: HR = 1.78, 95% CI (1.00–3.19), p < .05 Distance from the clinic (≤ 15 miles = ref.) - 15 to 50 miles: HR = 0.95, 95% CI (0.53–1.70) - 51 to 100 miles: HR = 0.59, 95% CI (0.24–1.50) - > 100 miles: HR = 2.05, 95% CI (1.03–4.10), p < .05 Study design components The authors identified demographic, clinical, and geographic predictors of survivorship attendance among survivors who were eligible to attend the clinic and were living in the clinic’s catchment area when it opened. Daly et al. Survivor clinic attendance among pediatricand adolescent-aged survivors of childhood cancer. J Cancer Surviv, 2019, 13:56–65. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To describe proportion of survivors seen for an initial survivor clinic visit within a large pediatric oncology program. Study design: Retrospective cohort study Country of origin: United States of America Type of participants: N= 866 CAYA cancer survivors (47.0% female Number/percentage of CAYA cancer survivors: N= 866 (100%). Age at primary cancer diagnosis: - 0 to 3 years: N= 303 - 4 to 7 years: N= 153 (17.7%) - 8 to 11 years: N=127 (14.7 - 12 to 15 years: N=176 (20.3%) - Older than 16 years: N= 107 (12.4%) Follow-up time: Not reported Age at time of study: Age at eligibility: - 2 to 5 years: N=207 (23.9%) - 6 to 11 years: N=271 (31.3%) - 12 to 17 years: N=234 (27.0%) Primary outcome measure: Completion of an initial visit to the survivor program after eligibility at 2 years following the completion of all cancer therapy. Those with an initial completed visit date after eligibility or within 90 days of eligibility and prior to the end of study follow-up were defined as seen. All others (including those scheduled but not seen and those who canceled or noshowed) were defined as not seen. Secondary outcome measure: Not applicable Likelihood of completing initial cancer survivor visit Gender (male =ref.) Female: HR = 1.01, 95% CI (0.86-1.18), p = NS Race/ethnicity (White, non-Hispanic = ref.), p < 0.05 - Black, non-Hispanic: HR = 0.64, 95% CI (0.52-0.79) - Hispanic: HR = 0.97, 95% CI (0.75-1.24) - Other/mixed race: HR = 0.70, 95% CI (0.49-0.99) Therapeutic modalities (chemotherapy only = ref.), p < 0.05 - Chemotherapy and radiation: HR = 0.87, 95% CI (0.72-1.06) - Radiation only (no chemotherapy): HR = 0.24, 95% CI (0.15-0.39) - Surgery only or other therapeutic modality: HR = 0.04, 95% CI (0.00.08) Age at eligibility (2-5 years = ref.), p < 0.05 - 6 to 11 years: HR = 1.55, 95% CI (1.24-1.93) - 12 to 17 years: HR = 1.44, 95% CI (1.14-1.83) - 18 years or older: HR = 1.25, 95% CI (0.95-1.63) Insurance status (private = ref.), p < 0.05 - Medicaid: HR = 0.77, 95% CI (0.64-0.92) - No insurance: HR = 0.71, 95% CI (0.44-1.15) Distance from clinic (< 25 miles = ref.), p < 0.05 - 25 to 50 miles: HR = 0.76, 95% CI (0.63-0.93) - > 50 miles: HR = 0.67, 95% CI (0.540.82) Study design components Demographic, cancerrelated, and logistical factors were collected for each survivor from the Georgia Comprehensive Cancer Registry. - 18 years or older: N=154 (17.8%) Type of cancer diagnosis: - Leukemia: N= 268 (30.9%) - Lymphoma: N= 169 (19.5%) - Bone/soft tissue sarcoma: N= 142 (16.4%) - Kidney: N= 78 (9.0%) - Neuroblastoma: N= 66 (7.6%) - Retinoblastoma: N= 39 (4.5%) - Other solid tumor: N=104 (12.0%) Profession: Not applicable Years of experience: Not applicable Abbreviations: CAYA, childhood, adolescent, and young adult, CI, confidence interval, HR, hazard ratio Ford et al. Barriers and facilitators of risk-based health care for adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. Cancer, 2020, 26,619-627. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To identify factors associated with inadequate riskbased follow-up care in adult survivors of childhood cancer. Study design: Survey study Country of origin: United States of America Type of participants: N=975 CAYA cancer survivors (53% female) Number/percentage of CAYA cancer survivors: 100% Age at primary cancer diagnosis: - 0-9 years (58.2%) - 10-20 years (41.8%) No absolute numbers reported. Follow-up time: Interval from diagnosis to survey: - 10-14 years (2.3%) - 15-19 years (40.7%) - 20-24 years (33.3%) - ≥ 25 years (23.7%) No absolute numbers reported. Age at time of study: - 17-19 years (4.6%) - 20-29 years (47.6%) - 30-39 years (35.3%) - 40-52 years (12.5%) No absolute numbers reported. Primary outcome measure: (1) Having a cancerrelated visit in the past 2 years (2) The likelihood of having a cancer-related visit in the next 2 years. Secondary outcome measure: Any care at a cancer centre or with a primary care physician. Multivariable models of factors associated with reporting a cancer-related medical visit within the last 2 years and planning a cancer-related medical visit within the next 2 years: Cancer-related medical visit within last 2 years Seen PCP since finishing treatment (yes vs. no) RR = 1.3, 95% CI (1.0–1.6), p = 0.019 Have cancer treatment summary (yes vs. no) RR = 1.3, 95% CI (1.0–1.6), p = 0.035 Chronic health problem related to cancer (none/mild = ref.) Moderate/severe/life-threatening: RR = 2.1, 95% CI (1.7–2.7), p < 0.001 Health care motivation (RR for each 1-unit increase on a 5-point Likert scale (not at all/almost never to extremely/almost always) Importance of cancer-related visit: RR = 1.2, 95% CI (1.1–1.3), p < 0.001 Beliefs about health and health care (RR for each 1unit increase on a 5-point Likert scale (not at all/almost never to extremely/almost always) - Cancer-related health problem likely: RR = 1.2, 95% CI (1.1–1.3), p < 0.001 - Confidence in doctors: RR = 1.2, 95% CI (1.0–1.3), p = 0.004 Study design components An 82-item, selfadministered questionnaire based on the Health Belief Model, the Multidimensional Health Locus of Control, and the Behavioral Model of Health Utilization was used. Type of cancer diagnosis - Leukemia (35.3%) - CNS (9.1 %) - Hodgkin lymphoma (15.3%) - Non-Hodgkin lymphoma - (10.1%) - Neuroblastoma (4.1%) - Wilms tumor (8.9%) - Soft-tissue sarcoma - (8.5%) - Bone cancer (8.8%) No absolute numbers reported. Painful memory of cancer treatment (RR for each 1unit increase on a 5-point Likert scale (not at all/almost never to extremely/almost always): RR = 1.1, 95% CI (1.0–1.2), p = 0.046 Cancer-related medical visit within next 2 years Radiation therapy, any (yes vs. no) RR = 1.2, 95% CI (1.0–1.5), p = .03 Cancer-related medical visit within last 2 years (yes vs. no) RR = 1.5, 95% CI (1.3–1.8), p < 0.001 Importance of cancer-related visit (yes vs. no) RR = 1.5, 95% CI (1.4–1.7), p < 0.001 Beliefs about health and health care (RR for each 1unit increase on a 5-point Likert scale (not at all/almost never to extremely/almost always) - Cancer-related health problem (late effect) likely: RR = 1.1, 95% CI (1.1–1.2), p < 0.001 - Confidence in doctors: RR = 1.1, 95% CI (1.0–1.2), p = 0.01 Abbreviations: CAYA, childhood, adolescent, and young adult, CI, confidence interval, CNS, central nervous system, PCP, primary care physician, RR, risk ratio Benedict et al. Cost of survivorship care and adherence to screening - aligning the priorities of health care systems and survivors. Transl Behav Med. 2021 Feb 11;11(1):132-142 Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: to examine how CAYA cancer survivors adherence to screening recommendations relates to the cost of care, insurance status, and institution-level financial outcomes. Study design: Retrospective chart review Country of origin: United States of America Type of participants: N=286 CAYA cancer survivors (50.4% female) Number/percentage of CAYA cancer survivors: N= 286 (100%). Age at primary cancer diagnosis: Mean age 7.9 years (range 0-23 yeas). Follow-up time: Not reported. Age at time of study: CAYA cancer survivors adherent to recommended procedures: 16.5 years (SD=6.9). CAYA cancer survivors not adherent recommended procedures: 18.0 years (SD=7.3) Type of cancer diagnosis - Leukemia (including B-ALL, T-ALL, AML Primary outcome measure: Survivorship care adherence. Secondary outcome measure: Survivorship care costs. Multivariate model predicting adherent versus nonadherent subgroup membership Black race (vs. all other races): OR = 0.4572, 95% CI (0.2317, 0.9019), p = 0.0240 Underserved insurance (vs. commercial insurance): OR = 0.5872, 95% CI (0.3610, 0.9550), p = 0.0319 Age at visit OR = 0.9699, 95% CI (0.9426, 0.9980), p = 0.0360 Male gender (vs. female gender): OR = 1.1332, 95% CI (0.7559, 1.6988), p = 0.5450 Cost of recommended procedures ≥$400 (vs. ≤$400): OR = 0.3161, 95% CI (0.2154, 0.4639), p < 0.0001 In words: patients with recommended procedures that exceeded $400 (median cost) were less likely to be adherent than those with recommended procedures that cost less than $400. Study design components Retrospective chart review with bivariate statistics to compare cost variables of adherent and nonadherent groups. Generalised linear model with generalised estimating equation to obtain ORs. and CML): N=124 (43.4%) - Lymphoma: N=78 (27.3%) - Bone and soft tissue tumors: N=20 (7.0%) - Embryonal tumors: N=50 (17.5%) - Others: N=14 (4.9%) Abbreviations: ALL, acute lymphoblastic leukemia, AML, acute myeloid leukemia, B-ALL, B-cell acute lymphoblastic leukemia, CAYA, childhood, adolescent, and young adult, CI, confidence interval, CML, chronic myeloid leukemia, OR, odds ratio, SD, standard deviation, T-ALL, T-cell acute lymphoblastic leukemia Tinsley et al. Barriers to long-term follow-up in pediatric Hodgkin lymphoma survivors. Pediatr Blood Cancer. 2024;71:e30855. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To determine reasons for lack of adherence to longterm follow-up care directly from the patients who are lost to follow-up. Study design: Retrospective chart review study with complimentary telephone interviews Country of origin: United States of America Type of participants: N=120 CAYA cancer survivors (47.5% female), of which n=64 were lost to follow-up and n=56 were in active follow-up. Number/percentage of CAYA cancer survivors: N=120 (100%) Age at primary cancer diagnosis: Mean age of diagnosis: 12.7 (SD = 4.2) years Follow-up time: Not reported Age at time of study: Mean age at last followup: 22 (SD = 5.3) years Type of cancer diagnosis Hodgkin lymphoma Primary outcome measure: Documented reasons for loss to follow-up (defined as not returning for a visit for 2 years or more after the patient had at least one visit to the survivorship clinic and not following up with an adult oncology provider). Secondary outcome measure: Not applicable. Multivariable model of risk of being lost-to-follow-up Age at last follow-up (continuous) OR = 0.9 (0.8–1.03), p = .1 Year of diagnosis (continuous) OR = 0.84 (0.7–0.9), p = .01 Insurance (public = ref.), p < .001 - None: OR = 22.2 (4–123) - Private: OR = 2.1 (0.4–12.2) Study design components Medical records of 120 survivors were extracted. Patients who met criteria for loss to follow-up were contacted by telephone at the last known number(s) documented in the medical record on at least three separate occasions for a structured interview. Abbreviations: CAYA, childhood, adolescent, and young adult, OR, odds ratio, SD, standard deviation Milam et al. Late effects surveillance adherence among young adult childhood cancer survivors: A population-based study. Pediatr Blood Cancer. 2024;71:e31328. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To examine rates of receiving surveillance tests among at risk young adult survivors in a populationbased study. Study design: Chart review study Country of origin: United States of America Type of participants: N=253 CAYA cancer survivors (67.1% female), of which n=119 at risk for heart disease, n=68 at risk for thyroid disease, and n=66 at risk for breast cancer Number/percentage of CAYA cancer survivors: N=253 (100%) Age at primary cancer diagnosis: Mean age of diagnosis: 12.6 (SD = 4.9) years Follow-up time: Mean years since cancer diagnosis: 14.2 (SD = 4.2) Age at time of study: Mean age 26.7 years (SD = 5.0) Type of cancer diagnosis - Osteosarcoma: n=40 (15.8%) - Ewing sarcoma: n=14 (5.5%) Primary outcome measure: Receipt of any (i.e., one or more) of the three surveillance tests (heart disease, thyroid disease, and breast cancer). Secondary outcome measure: Not applicable. Multivariable model for a composite outcome variable that represented receipt of any (i.e., one or more) of the three surveillance tests Socioeconomic status (lowest = ref.) Low: OR = 1.86, 95% CI (0.84-4.16), p = .13 Medium: OR = 1.38, 95% CI (0.56-3.39), p = .48 High: OR = 1.05, 95% CI (0.41-2.67), p = .92 Highest: OR = 0.96, 95% CI (0.35-2.60), p =.94 Any insurance (yes vs. no) OR = 13.32, 95% CI (1.60-110.87), p = .02 Treatment intensity (dichotomized, 1 = most intensive, 0 = all others) OR = 1.68, 95% CI (0.86-3.29), p = .13 Received written cancer treatment summary (yes vs. no) OR = 1.27, 95% CI (0.70-2.32), p = .44 Has doctor for regular (non-cancer) health checkups (yes vs. no) OR = 1.50, 95% CI (0.68-3.31), p = .32 Discussed cancer-related follow-up care needs with a doctor (in the last 2 years, yes vs. no) OR = 2.75, 95% CI (1.43-5.28), p <.01 Knowledge of need of lifelong follow-up care (yes vs. no) OR = 1.59, 95% CI (0.83-3.05), p = .16 Study design components Receipt of three late effects screening tests as recommended by the COG LTFU Guidelines were examined. Participants responded to a selfreport checklist, including, “In the past 2 years, did you receive any of the following medical tests: echocardiogram or MUGA (multigated acquisition) scan, thyroid test, or breast exam.” Survivors were classified as “adherent” if they completed the relevant test within the past 2 years. Cancer diagnosis, gender, race/ethnicity, relationship status, age at diagnosis, current age, number of late effects, neighborhood socioeconomic status, treating hospital - Wilms tumor: n=13 (5.1%) - Acute myeloid leukemia: n=52 (20.6%) - Brain cancer: n=68 (26.9%) - Hodgkin lymphoma: n=56 (22.1%) - Non-Hodgkin lymphoma: n=10 (4.0%) Any healthcare self-efficacy (yes vs. no) OR = 1.16, 95% CI (0.90-1.49), p = .25 category, and provider type were obtained using both cancer registry and selfreported survey data. Abbreviations: CAYA, childhood, adolescent, and young adult, CI, confidence interval, COG, Children’s Oncology Group, OR, odds ratio, SD, standard deviation Shuldiner et al. Longitudinal adherence to surveillance for late effects of cancer treatment: a population-based study of adult survivors of childhood cancer. CMAJ: 2024; 196(9):e282-e294. Aim & Study design Participants Outcome Measures Results Additional Remarks Aim: To examine adherence to surveillance guidelines for high yield tests and identify risk factors for nonadherence in adult survivors of childhood cancer. Study design: Retrospective, population based cohort study Country of origin: Canada Type of participants: N=3241 CAYA cancer survivors, of which 327 (39.8 % female), 234 (100 % female), and 3205 (43.0 % female) were at elevated risk for colorectal cancer, breast cancer, and cardiomyopathy, respectively. Number/percentage of CAYA cancer survivors: N=3241 (100%) Age at primary cancer diagnosis: Median age of diagnosis by risk group: - Colorectal cancer: 11 (range 6–14) years - Breast cancer: 13 (range 8–15) years - Cardiomyopathy: 9 (range 4–13) years Follow-up time: Median follow-up time by risk group: Primary outcome measure: Guideline adherence to surveillance for colorectal cancer, breast cancer, or cardiomyopathy. Secondary outcome measure: Not applicable. Multivariable model for predictors of longitudinal adherence to colorectal cancer surveillance guidelines (n=327) Age at diagnosis (continuous) RR = 1.07, 95% CI (1.01–1.14) Sex (female vs. male) RR = 1.86, 95% CI (1.05–3.31) Rurality and neighbourhood income - Rural v. urban and income quintile: RR=1, 95% CI (0.33–3.04) - Urban and income quintile 1 vs. urban and income quintile: RR=1.25, 95% CI (0.57–2.73) - Urban and income quintile 2 vs. urban and income quintile 5: RR = 0.93, 95% CI (0.47–1.83) - Urban and income quintile 3 vs. urban and income quintile 5: RR=0.94, 95% CI (0.41–2.18) - Urban and income quintile 4 vs. urban and income quintile 5: RR=1.07, 95% CI (0.51–2.21) Anthracycline dose - < 250 mg/m2 vs. none: RR = 1.2, 95% CI (0.6–2.4) - ≥ 250 mg/m2 vs. none: RR = 1.75, 95% CI (0.89– 3.45) - Aggregated Diagnosis Groups - High vs. none: RR=8.58, 95% CI (2.87–25.59) - Intermediate vs. none: RR=7.51, 95% CI (2.99– 18.88) - Low vs. none: RR = 3.8, 95% CI (1.6–9.05) Study design components Health care administrative data was used to identify adult survivors of childhood cancer who were at elevated risk of therapy-related colorectal cancer, breast cancer, or cardiomyopathy. Using a Poisson regression framework, longitudinal adherence and predictors of adherence to the Childrens Oncology Group surveillance Guideline was assessed. - 4 to 7 years: N= 153 (17.7%) - 8 to 11 years: N=127 (14.7 - 12 to 15 years: N=176 (20.3%) - Older than 16 years: N= 107 (12.4%) kidney tumour, neuroblastoma, retinoblastoma, other solid tumours (retrospective cohort study) and other factors DemoorGoldschmi dt et al. 2017 HCPs (paediatric oncologists, radiation oncologists, surgeons) N=54 France n/a n/a n/a Quantitative study (descriptive survey) Barriers and facilitators Ernst et al. 2022 CAYA cancer survivors N=633 Germany Not reported Time since cancer diagnosis: mean 28.07 years (SD =3.21) - Leukaemia’s: N=267 (42.2%) - Central nervous system tumours: N=84(13.3%) - Lymphomas: N=64 (10.1%) - Others: N=218 (34.4%) Mixed methods study (data from a standardised medical examination, a survey, and indepth interviews with a subsample) Barriers, facilitators, and other factors Ford et al. 2020 CAYA cancer survivors N=975 United States of America 0-9 years: (58.2%) 10-20 years: (41.8%) Interval from diagnosis to survey: - 10-14 years (2.3%) - 15-19 years (40.7%) - 20-24 years (33.3%) - ≥ 25 years (23.7%) - Leukaemia (35.3%) - CNS (9.1 %) - Hodgkin lymphoma (15.3%) - Non-Hodgkin lymphoma - (10.1%) - Neuroblastoma (4.1%) - Wilms tumour (8.9%) - Soft-tissue sarcoma - (8.5%) Quantitative study (survey) Barriers, facilitators, and other factors - Bone cancer (8.8%) Gramatges et al. 2018 CAYA cancer survivors and parents N=213 United States of America Not reported Interval from diagnosis to survey: < 10 years: 70% > 10 years: 30% Not reported Quantitative study (survey) Barriers and facilitators Hebdon et al. 2018 CAYA cancer survivors & HCPs (support personnel, primary care providers, oncologists, and registered nurses) N=20 United States of America Not reported Completed treatment in last 10 years (no other information provided) Not reported Qualitative study (semistructured interviews) Barriers and facilitators Howard et al. 2018 CAYA cancer survivors & HCPs N=43 Canada - 0–4 years (27%) - 5–9 years (33%) - 10+ years (40%) Interval from diagnosis to survey: - 10-14 years (2.3%) - 15-19 years (40.7%) - 20-24 years (33.3%) - ≥ 25 years (23.7%) - Leukaemia and lymphoma (53%) - Brain (20%) - Sarcoma (not including brain) (20%) - Other solid tumours (7%) Qualitative study (indepth interviews) Barriers and facilitators İncesoy Özdemİr et al. 2020 HCPs (care directors) N=21 Turkey n/a n/a n/a Quantitative study (survey) Barriers and facilitators Iyer et al. 2017 HCPs (paediatricians, internists, GPs, and obstetricians/gynaecologi sts) N=134 United States of America n/a n/a n/a Mixed methods (surveys and interviews) Barriers and facilitators Keats et al. 2019 CAYA cancer survivors, parents & GPs N=24 Canada Mean 9 years (SD = 4.7, range 3 - 15 years) Not reported acute lymphoblastic leukaemia, osteosarcoma, lymphoma, nephroblastoma, germinoma, and embryonal rhabdomyosarcoma Qualitative study (semistructured Interviews) Barriers and facilitators King et al. 2023 HCPs N=148 United States of America n/a n/a n/a Quantitative study (survey) Barriers and facilitators Knighting et al. CAYA cancer survivors N=113 United Kingdom Not reported Not reported Leukaemia, lymphoma, solid tumour, other Mixed methods (surveys and interviews) Barriers and facilitators Lie et al. 2017 CAYA cancer survivors N=34 Norway Mean 13 years (SD=4, range 3-18 years) Time since diagnosis: mean 26 years (SD=9, range 12–39 years) Hodgkin Lymphoma (62%), non-Hodgkin lymphoma (38%). Qualitative study (focus groups) Barriers and facilitators Linge et al. 2021 CAYA cancer survivors N=16 Sweden Median 7.19 years (SD=4.7, range 2 -17 years) Time since diagnosis: median 31.5 years (range 20–50) - CNS Tumours (n=4) - Hepatoblastoma (n=1) - Lymphoma (n=2) - Sarcoma (n=1) - AML (n=2) Mixed methods (survey and focus groups) Barriers and facilitators Mani et al. 2019 Primary care physicians N=86 United States of America n/a n/a n/a Quantitative study (survey) Barriers and facilitators May et al. 2017 CAYA cancer survivors N=442 United States of America Mean 6.8 years (SD=5.2; median=4.1). Time since diagnosis: mean 13.4 years (SD=1.2, median=13.4) - Leukaemia (39.8%) - Lymphoma (9.7%) - Solid tumour (33.7%) - CNS tumour 16.7%) Quantitative study (retrospective chart review) Barriers, facilitators, and factors McLoone et al. 2022 HCPs (GPs, paediatric oncologists, and survivorship nurses) N=70 Australia & New Zealand n/a n/a n/a Qualitative study (semistructured interviews) Barriers and facilitators Michel et al. 2017 HCPs (medical oncologists, paediatric oncologists, GPs, paediatricians) N=183 Switzerland n/a n/a n/a Qualitative study (qualitative survey) Barriers and facilitators Milam et al. 2021 CAYA cancer survivors N=1,166 United States of America Mean 11.6 years (SD = 5.4) Time since diagnosis: - 5-9 years: N=296 (45.3%) - Lymphoma: N=244 (48.7%) - Leukaemia: N= 407 (45.9%) Quantitative study (survey) Barriers, facilitators, and other factors - 10-14 years: N=391 (44.9%) - 15-22 years: N=479 (44.9%) - Brain and other nervous system: N=183 (41.3%) - Endocrine system: N= 68 (46.26%) - Skin: N=45 (42.86%) - Other (oral cavity and pharynx, digestive system, respiratory system, soft tissue including heart, urinary system, eye and orbit, and miscellaneous): N=219 (42.9%) Milam et al. 2024 CAYA cancer survivors N= 253 United States of America Mean 12.6 years (SD = 4.9) Mean time since cancer diagnosis: 14.2 (SD = 4.2) - Osteosarcoma: N=40 (15.8%) - Ewing sarcoma: N=14 (5.5%) - Wilms tumor: N=13 (5.1%) - Acute myeloid leukemia: N=52 (20.6%) - Brain cancer: N=68 (26.9%) - Hodgkin lymphoma: N=56 (22.1%) - Non-Hodgkin lymphoma: N=10 (4.0%) Quantitative study (chart review) Barriers, facilitators, and other factors Miller et al. 2024 HCPs N= 31 United States of America n/a n/a - n/a Qualitative study (semiBarriers and facilitators structured interviews) Mobley et al. 2021 CAYA cancer survivors N=1,106 United States of America Not reported Not reported - Leukaemia: N= 395 (36%) - Lymphoma: N= 241 (22%) - Brain or central nervous system: N= 153 (14%) - Neuro, retino, renal, hep, germ cell: N=119 (11%) - Bone or sarcoma: N= 96 (9%) - Other carcinoma: N=102 (9%) Quantitative study (survey) Barriers and facilitators Noyd et al. 2021 CAYA cancer survivors N=865 United States of America Seen in clinic 5–7 years after initial diagnosis: Mean 7.27 years (SD 5.30) Not seen in clinic 5– 7 years after initial diagnosis: Mean 8.35 years (SD 6.20) Not reported - Leukaemia: N=225 (26.0%) - Non-Hodgkin lymphoma: N=58 (6.69%) - Hodgkin lymphoma: N=35 (4.05%) - CNS: N=275 (31.79%) - Neuroblastoma: N=42 (4.86%) - Retinoblastoma: N=40 (4.62%) - Bone tumours: N= 39 (4.51%) - Wilms’ tumour: N= 36 (4.16%) - Soft-tissue sarcoma: N=24 (2.77%) Quantitative study (retrospective cohort study) Barriers and facilitators - Other: N=91 (10.51%) Noyd et al. 2023 CAYA cancer survivors N=449 United States of America Only given per group: - Optimal followup: 6.5 years, 95% CI (0.26; 6.0–7.0) - No optimal follow-up: 10.2 years (0.64; 8.9–11.5) Not reported Leukaemia, NonHodgkin's Lymphoma, Hodgkin's Lymphoma, CNS, Retinoblastoma, Bone Neuroblastoma, Wilms Sarcoma, Other Quantitative study (retrospective cohort study) Barriers and facilitators Ou et al. 2018 CAYA cancer survivors N=1,816 United States of America - 0 to 4 years: N=564 (31.1%) - 5 to 10 years: N=360 (19.8%) - 11 to 17 years: N=463 (25.5%) - 18 to 25 years: N=429 (23.6%) Time since diagnosis: - 5 years or less: N=136 (7.5%) - 6 to 10 years: N=632 (34.8%) - 11 to 15 years: N=459 (25.3%) - 16 or more years: N=589 (32.4%) Central nervous system tumours, leukaemia, lymphoma, and solid tumour Quantitative study (retrospective cohort study) Barriers, facilitators, and other factors Prasad et al. 2021 CAYA cancer survivors N=79 India Not reported Median duration of follow-up: 16 years (range 7–31); starting point not reported - Leukaemia’s: N=267 (42.2%) - Central nervous system tumours: N=84(13.3%) - Lymphomas: N=64 (10.1%) - Others: N=218 (34.4%) Qualitative study (semi structured interviews) Barriers and facilitators Psihogios et al. 2019 AYA cancer survivors and parents N=29 United States of America Not reported Time AYA off treatment: mean 1.5 years (SD=0.6, range 0.9-2.8) Leukaemia, lymphoma, solid tumour Qualitative study (focus groups) Barriers and facilitators Time off treatment YA not engaged in LTFU: mean 17.4 years (SD=6.2, range 12.0-26.0) Ryan et al. 2021 CAYA cancer survivors & HCPs (paediatric and adult oncologists, a primary care physician, and an allied health professional) N=14 Canada < 18 years of age n/a n/a Qualitative study (semistructured interviews) Barriers and facilitators Sadak et al. 2019 HCPs (physician, nurse practitioner, physician assistant, nurse, nutritionist, social worker, psychologist, trainee, other) N=97 United States of America n/a n/a n/a Quantitative study (survey) Barriers and facilitators Shuldiner et al. 2021 CAYA cancer survivors N=30 Canada 1-16 years Not reported Leukaemia, lymphoma, neuroblastoma, bone tumour, liver tumour Qualitative study (semistructured interviews) Barriers and facilitators Shuldiner et al. 2024 CAYA cancer survivors N = 3241 Canada Median age of diagnosis by risk group: - Colorectal cancer: 11 (range 6–14) years - Breast cancer: 13 (range 8– 15) years - Cardiomyopat hy: 9 (range 4– 13) years Median follow-up time by risk group: - Colorectal cancer: 1.41 (range 0–13.5) years - Breast cancer: 1.95 (range 0.1–11.4) years - Cardiomyopat hy: 9.33 (range 4.2–14.6) years Colorectal cancer: - Leukemias: n=40 (12.2%) - Lymphomas: n=137 (41.9%) - Central nervous system tumours: n=65 (19.9%) Solid tumours: n=80 (24.8%) Breast cancer: - Leukemias: n=25 (10.7%) Quantitative study (retrospective cohort study) Barriers, facilitators, and other factors - Lymphomas: n=149 (63.7%) - Central nervous system tumours: n=36 (15.4%) - Solid tumours: n=15 (6.7%) Cardiomyopathy: - Leukemias: n=1402 (43.7%) - Lymphomas: n=939 (29.3%) - Central nervous system tumours: n= 138 (4.3%) - Solid tumours: n=749 (23.2%) Signorelli et al. 2017 HCPs (medical directors, clinical nurse practitioners and/or late effects coordinators of LTFU Clinics) N=19 Australia & New Zealand n/a n/a n/a Qualitative (semistructured interviews) Barriers and facilitators Signorelli et al. 2019 CAYA cancer survivors, Parents & HCPs (primary care physician) N=194 Australia < 16 years of age n/a Leukaemia, Lymphoma, Brain, Other Quantitative study (survey) Barriers and facilitators Signorelli et al. 2019 CAYA cancer survivors & parents of survivors N=251 New Zealand < 25 years of age Interval from diagnosis to survey: - AYA CS: mean 14.3 years (range 5-24) - Survivors <16 years: 9.7 years (5-15) Leukaemia, lymphoma, brain cancer, and other Mixed methods (surveys and interviews) Barriers and facilitators Signorelli et al. 2023 CAYA cancer survivors N=634 Australia & New Zealand Not reported Time since diagnosis: mean - Leukaemia: N=278 (44.2%) Quantitative study (survey) Barriers, facilitators, 15.9 years (SD=7.9, range 5-59) - Lymphoma: N=76 (12.1%) - Brain tumour: N=67 (10.7%) - Sarcoma: N=67 (10.7%) - Wilms’ tumour: N=43 (6.7%) - Neuroblastoma: N=39 (5.7%) - Other cancer diagnoses: N=59 (9.3%) and other factors Sleight et al. 2018 CAYA cancer survivors N=193 United States of America Mean 12.1 (SD=3.0) years Time since diagnosis: 7.8 (SD 2.0 years) - Not reported Quantitative study (survey) Barriers and facilitators Snyder et al. 2024 CAYA cancer survivors N= 377 United States of America Not reported Time since cancer diagnosis: 38 (SD 8.0 years) - Central nervous system: N=52 (13.8%) - Leukemia/Lympho ma: N=194 (51.5%) - Solid tumors: N=131 (34.7%) Quantitative study (survey) Barriers and facilitators Tinsley et al. 2023 CAYA cancer survivors N= 120 United States of America Mean 12.7 (SD =4.2) years Not reported Hodgkin lymphoma Mixed methods (retrospective chart review and interviews) Barriers, facilitators, and other factors Van den Oever et al. 2023 CAYA cancer survivors, HCPs, and care managers N=54 Austria, Belgium, Germany, Italy, Lithuania, Spain Not reported Not reported Not reported Quantitative study (semistructured survey) Barriers and facilitators Viola et al. 2022 CAYA cancer survivors, HCPs, and one parent of a CAYA cancer survivor N=28 United States of America < 21 years of age Interval from diagnosis to survey: 2.0 – 21.5 years Blood cancer, solid tumour, brain tumour Qualitative study (content analysis) Barriers and facilitators White et al. 2018 CAYA cancer survivors N=94 Canada < 18 years of age Time since diagnosis: mean 22.68 years (SD=13.20, range 4.10-62.68 years) All but in situ and nonmelanoma skin cancers Qualitative study (qualitative survey) Barriers and facilitators Abbreviations: ALL, acute lymphoblastic leukaemia, AML, acute myeloid leukaemia, AYA, adolescent and young adult, B-ALL, B-cell acute lymphoblastic leukaemia, CAYA, childhood, adolescent, and young adult, CML, chronic myeloid leukaemia, CNS, central nervous system, GPs, general practitioners, HCPs, healthcare providers, LTFU, longterm follow-up, n/a, not applicable, SD, standard deviation, T-ALL, T-cell acute lymphoblastic leukaemia, YA, young adult Table 6. Overview of significant and non-significant findings associated with LTFU care. N studies significant N studies non-significant Older age at diagnosis 3 [36, 42, 65] 0 Younger age at diagnosis 1 [65] 0 Descent (race/ethnicity) 4 [32, 35, 36, 39] 1 [42] Insurance (no vs. yes) 2 [35, 36] 0 Private health insurance (yes vs. no) 0 1 [56] Insurance change (vs. stable coverage) 1 [57] 0 Public insurance (vs. private insurance) 1 [57] 1 [37] No/unknown insurance (vs. private insurance) 1 [37] 0 Underserved insurance (vs. commercial insurance) 1 [32] 0 Type of treatment received (chemotherapy only = ref.) 2 [35, 36] 0 Type of treatment received (all treatments separately in model with ‘yes’ as ref.) 0 1 [56] Stem cell transplant (yes vs. no) 2 [36, 65] 0 Late effect risk hemato-oncology 0 1 [41] Late effect risk neuro-oncology 1 [41] 0 Cancer diagnosis (CNS = ref.)* 1 [42] 2 [42] Cancer diagnosis (leukemia = ref.) 0 2 [17, 56] Gender 1 [65] 6 [17, 32, 35, 39, 42, 56] Current older age 5 [17, 32, 35, 39, 56] 0 Time since cancer diagnosis (continuous) 2 [39, 56] 1 [17] Educational level 0 2 [17, 56] Marital status 0 1 [56] Area of residence 0 1 [56] Income 0 2 [42, 56] Employment status 0 1 [56] Treatment intensity (categorized from 1-4, with 1 = least intensive [eg, surgery only]; 2=moderately intensive [eg, chemotherapy or radiation]; 3=very intensive [eg, 2 or more treatment modalities]; and 4=most intensive [eg, relapse regimens]) 0 2 [39, 56] Treatment intensity (dichotomized) 0 1 [62] Total number of late effects (none = ref.) 1 [39] 0 Total number of late effects (continuous) 0 1 [56] Higher perceived risk of late effects (continuous) 1 [38] 0 Higher likeliness of late effects 1 [41] 0 Total number of motivators for engaging in survivorship care 1 [56] 0 Socioeconomic status (low/medium/high/highest) 0 2 [39, 62] Received written cancer treatment summary 2 [38, 39] 1 [62] Has doctor for regular (non-cancer) health checkups 1 [39] 1 [62] Discussed cancer-related follow-up care needs with a doctor (in the last 2 years) 1 [39] 0 Knowledge of the need for lifelong follow-up care 1 [39] 0 Health-care self-efficacy 1 [39] 1 [62] Family influence health-care decisions 0 1 [39] Rurality 1 [58] 0 Previous relapse 1 [42] 1 [42] Distance from clinic 2 [35, 42] 1 [42] Seen PCP since finishing treatment (yes vs. no) 1 [38] 0 Chronic health problem related to cancer (none/mild = ref.) 1 [38] 0 Health care motivation 1 [38] 0 Belief that having cancer-related health problems is likely 1 [38] 0 Confidence in doctors 1 [38] 0 Painful memory of cancer treatment 1 [38] 0 Treatment with radiation 3 [35, 36, 65] 0 Cancer-related medical visit within last 2 years (yes vs. no) 1 [38] 0 Perceived Importance of cancer-related visit 1 [38] 0 Cost of recommended procedures ≥$400 (vs. ≤$400) 1 [32] 0 Knowledge of need of lifelong follow-up care (yes vs. no) 0 1 [62] Treatment with anthracyclines 1 [65] 0 Anthracycline dose 0 1 [65] Year of cancer diagnosis 1 [64] 0 Period of diagnosis 1 [65] 0 Aggregated Diagnosis Groups scores representing morbidity 1 [65] 0 * This study [43] tested different variable models (see also the evidence tables in Supplementary File A) and found cancer diagnosis (CNS = ref.) to be significant in 6 models and non-significant in 2 models. Abbreviations: CNS, central nervous system, LTFU, long-term follow-up, PCP, primary care physician Appendix 1 Search Strategy for PubMed: Search 1 Children and young adults: infan* OR newborn* OR new-born* OR perinat* OR neonat* OR baby OR baby* OR babies OR toddler* OR minors OR minors* OR boy OR boys OR boyfriend OR boyhood OR girl* OR kid OR kids OR child OR child* OR children* OR schoolchild* OR schoolchild OR school child[tiab] OR school child*[tiab] OR adolescen* OR juvenil* OR youth* OR teen* OR under*age* OR pubescen* OR pediatrics[mh] OR pediatric* OR paediatric* OR peadiatric* OR school [tiab] OR school*[tiab] OR prematur* OR preterm* OR young adult[mh] OR young adult Search 2 Cancer: leukemia OR leukemi* OR leukaemi* OR (childhood ALL) OR AML OR lymphoma OR lymphom* OR hodgkin OR hodgkin* OR T cell OR B cell OR non-hodgkin OR sarcoma OR sarcom* OR sarcoma, Ewing’s OR Ewing* OR osteosarcoma OR osteosarcom* OR wilms tumour OR wilms* OR nephroblastom* OR neuroblastoma OR neuroblastom* OR rhabdomyosarcoma OR rhabdomyosarcom* OR teratoma OR teratom* OR hepatoma OR hepatom* OR hepatoblastoma OR hepatoblastom* OR PNET OR medulloblastoma OR medulloblastom* OR PNET* OR neuroectodermal tumours, primitive OR retinoblastoma OR retinoblastom* OR meningioma OR meningiom* OR glioma OR gliom* OR paediatric oncology OR paediatric oncology OR childhood cancer OR childhood tumour OR childhood tumours OR brain tumour* OR brain tumour* OR brain neoplasms OR central nervous system neoplasm OR central nervous system neoplasms OR central nervous system tumour* OR central nervous system tumour* OR brain cancer* OR brain neoplasm* OR intracranial neoplasm* OR leukemia lymphocytic acute OR leukemia, lymphocytic, acute[mh] OR cancer OR cancers OR cancer* OR oncology OR oncolog* OR neoplasm OR neoplasms OR neoplasm* OR carcinoma OR carcinom* OR tumour OR tumour OR tumour* OR tumour* OR tumours OR tumours OR malignan* OR malignant OR hematooncological OR hemato oncological OR hemato-oncological OR hematologic neoplasms OR hematolo* Search 3 Survivors: Survivor OR survivors OR survivor* OR long term survivor OR long term survivors OR long term survivor* OR survivo* OR long term survival[tiab] OR survival[mh] Search 4 Care: continuity of patient care OR quality assurance, health care OR aftercare OR delivery of health care OR home care OR “models of care” OR shared care OR health care OR delivery of care OR follow-up care OR models, organisational OR models, organisational OR referral and consultation OR “health services need and demand” OR attitude of health personnel OR long-term care OR transition of care OR “transfer of care” OR transitional model OR transition-based model ORnurse[tiab] OR nursing[sh] OR nursing[tiab] OR nurse* OR nurses OR general practitioner OR family practice OR oncologist [All Fields] OR oncologists OR oncologist* OR health personnel OR “health care provider” OR “primary care provider” OR “secondary care provider” OR “care provider” OR physicians, family OR primary care physician OR family physician OR “health care professional” OR health care quality assuranc* OR healthcare OR organizational model* OR organisational model* OR nurs* Search 5 Barriers and facilitators: Barriers OR Barrier OR Barrier* OR limitation OR risk OR risk* OR tool OR tools OR tool* OR facilitator OR facilitate OR facilitate* OR help OR help* OR aid OR aid* OR support OR support* OR recommend OR recommendations OR recommend* OR limitation* OR facilitat* Search 1 AND 2 AND 3 AND 4 AND 5 Limit publication date 01-01-2017 onwards