Psychosocial issues need more attention in COPD self-management education
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Full Terms & Conditions of access and use can be found at https://www.tandfonline.com/action/journalInformation?journalCode=ipri20 Scandinavian Journal of Primary Health Care ISSN: 0281-3432 (Print) 1502-7724 (Online) Journal homepage: https://www.tandfonline.com/loi/ipri20 Psychosocial issues need more attention in COPD self-management education Hannele Siltanen, Tiina Aine, Heini Huhtala, Marja Kaunonen, Tuula Vasankari & Eija Paavilainen To cite this article: Hannele Siltanen, Tiina Aine, Heini Huhtala, Marja Kaunonen, Tuula Vasankari & Eija Paavilainen (2020) Psychosocial issues need more attention in COPD selfmanagement education, Scandinavian Journal of Primary Health Care, 38:1, 47-55, DOI: 10.1080/02813432.2020.1717087 To link to this article: https://doi.org/10.1080/02813432.2020.1717087 © 2020 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. View supplementary material Published online: 06 Feb 2020. Submit your article to this journal Article views: 434 View related articles View Crossmark data
RESEARCH ARTICLE Psychosocial issues need more attention in COPD self-management education Hannele Siltanen a,b,c , Tiina Aine d , Heini Huhtala a , Marja Kaunonen a,e , Tuula Vasankari f,g and Eija Paavilainen a,h a Department of Health Sciences, Faculty of Social Sciences, Tampere University, Tampere, Finland; b Nursing Research Foundation, Helsinki, Finland; c The Finnish Centre for Evidence-Based Health Care: A Joanna Briggs Institute Affiliated Group, Helsinki, Finland; d Faculty of Medicine and Health Technology, Tampere University, Tampere, Finland; e Pirkanmaa Hospital District, Tampere, Finland; f Division of Medicine, Department of Pulmonary Disease and Clinical Allergology, University of Turku, Turku, Finland; g Finnish Lung Health Association (FILHA), Helsinki, Finland; h Etel€ a-Pohjanmaa Hospital District, Sein€ ajoki, Finland ABSTRACT Objective: To find out how regularly the contents of patient education regarded as essential for COPD patients’self-management are provided by healthcare professionals in specialised healthcare (SHC) and primary healthcare (PHC) in Finland. Design: A cross-sectional study based on an e-questionnaire with 42 items on the content of self-management education of COPD patients. Setting: The study sample included all public SHC units with pulmonary outpatient clinics (n¼29) and nine out of 160 health centres in Finland. Subjects: 83 doctors and 162 nurses. Main outcome measures: The respondents’answers on how regularly they included the contents regarded as essential for COPD patients’self-management in their education of COPD patients. Results: COPD patients were educated regularly on medical issues regarding COPD treatment, such as smoking cessation, exercise and pharmacological treatment. However, issues vital for coping with the disease, such as psychological well-being, stress management or fatigue, were often ignored. Patient education in SHC seemed to be more systematic than education in PHC. The education provided by the asthma/COPD nurses (n¼70) was more systematic than the education provided by the other nurses (n¼84). Conclusion: Healthcare professionals’continuous education should cover not only the medical but also the psychosocial aspects of coping with COPD. The role of doctors and nurses should be considered to ensure that there is no gap in COPD patients’education. Training asthma/COPD nurses and promoting specialised nurse-led asthma/COPD clinics in primary care could be beneficial while improving practices of patient education that enhance patients’ability to cope with the disease. KEY POINTS Issues vital for coping with chronic obstructive pulmonary disease (COPD), such as psychological well-being, stress and fatigue, are irregularly included in self-management education both in primary and specialised healthcare. Patient education provided by asthma/COPD nurses is more regular than patient education provided by other nurses. The distribution of work between doctors and nurses should be considered to ensure that there is no gap in COPD patients’education. ARTICLE HISTORY Received 30 April 2019 Accepted 2 December 2019 KEYWORDS COPD; patient education; self-management; specialised healthcare; primary healthcare; asthma/ COPD nurses Introduction Chronic obstructive pulmonary disease (COPD) is one of the leading causes of mortality and morbidity worldwide [1]. Smoking is the main causative factor of COPD, and it is a common risk factor for a variety of co-morbidities, such as cardiovascular diseases, osteoporosis and musculoskeletal diseases [2]. COPD patients also have other co-morbidities, including depression and anxiety [3]. CONTACT Hannele Siltanen [email protected] Department of Health Sciences, Faculty of Social Sciences, Tampere University, Tampere, Finland Supplemental data for this article can be accessed here. ß2020 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. SCANDINAVIAN JOURNAL OF PRIMARY HEALTH CARE 2020, VOL. 38, NO. 1, 47–55 https://doi.org/10.1080/02813432.2020.1717087
Smoking cessation, adequate use of medication, regular physical exercise and healthy nutrition are the cornerstones of treatment of COPD. The aim of treatment is to relieve symptoms, promote quality of life, delay progression, prevent exacerbations and reduce mortality [4]. COPD patients need information and education to successfully perform self-management. An ability and the motivation to perform self-management increases their quality of life and protects them from exacerbations. Thus, patient education should be included as an essential part of COPD treatment [5]. Selfmanagement is a lifetime task in which patients need to develop skills, such as problem-solving, decisionmaking, resource utilisation, taking action and developing a patient–healthcare provider partnership [6]. Furthermore, patients have to learn how to integrate those skills in their everyday life, thereby enabling certain behavioural changes, such as smoking cessation [7]. A prerequisite for an effective alliance between COPD patients and healthcare professionals is that healthcare professionals are familiar with the essential themes of patient education. The themes are global and the same for all COPD patients, irrespective of their healthcare organisation or country. According to the Finnish national guidelines [8], primary healthcare (PHC) is mainly responsible for the early detection and diagnosis of COPD, and only certain COPD patients are treated in specialised healthcare (SHC). Doctors in PHC are mostly specialists in general practice or unspecialised doctors, whereas doctors in SHC usually are pulmonologists or registrars. Nurses in PHC and in SHC can be registered nurses, specialised nurses (e.g. in internal or surgical diseases) or public health nurses. Furthermore, they can achieve a special competence in asthma/COPD. However, the education has not been systematically organised, and it has not been a vital prerequisite for working as an asthma/COPD nurse. In Finnish PHC, a COPD patient usually meets a doctor and, sporadically, a nurse. This depends on the patient’s situation and the healthcare organisation’s arrangements. In SHC, patients usually visit both a doctor and a nurse. The aim of this study is to find out how regularly the contents of patient education regarded as essential for COPD patients’self-management in the literature are provided by healthcare professionals, both doctors and nurses, in practical work in SHC and PHC in Finland. Materials and methods Survey questionnaire The questionnaire was developed by two authors of the research (HS and EP) utilising previous studies [9–12], clinical pathways [13] and guidelines [8], and it was pretested for this cross-sectional descriptive study. The e-questionnaire comprised 42 items concerning the contents of patient education regarded as essential for COPD patients’self-management together with questions pertaining to the background of the respondent, such as age, experience of COPD treatment and whether the respondent was working as an asthma/COPD nurse (Supplementary file). Research subjects The link to the e-questionnaire was mailed to chief physicians and head nurses of all pulmonary disease departments in the university hospitals (n¼5) and district hospitals (n¼24) as well as to chief physicians and head nurses of primary health centres (n¼9 out of 160 centres) in Finland. The study sample included all public SHC units with pulmonary outpatient clinics in the country, with the exception of Swedishspeaking Ahvenanmaa. Furthermore, a sample of nine PHC centres was selected as a representative sample based on their size (two small and seven large centres) and location around Finland. The chief doctors and head nurses were asked to forward the link for the e-questionnaire and the study information sheet to their subordinates, that is, doctors and nurses who took care of COPD follow-up visits. The survey was carried out between 1 October 2016 and 15 December 2016. Analysis In the questionnaire, the respondents were asked how often on a general level they included each of the 42 educational topics in their education with COPD patients. The response options were education is provided ‘regularly’,‘sometimes’,‘on patient request’or ‘education is not provided at all’. In the analysis, the first category, named ‘regularly’, has been seen as an indicator of the established practice in the organisation, whereas all the other alternatives have been seen as representing an action that could be coincidental and could include a risk of non-education. Thus, the results described below are based on the ‘regularly’responses, with the exception of Figure 1. Data analysis was performed using SPSS version 22.0. Descriptive statistics are presented as frequencies and percentages. 48 H. SILTANEN ET AL.
Results In total, 245 completed questionnaires were returned. The respondents from SHC units (n¼27/29 units, 93%) included 49 doctors and 79 nurses, and the respondents from health centres (n¼9/9) included 34 doctors and 79 nurses. There were 4 nurses who did not identify their workplace. The answers of 8 nurses (5 from SHC, 3 from PHC) were excluded due to their special job descriptions. Thus, the final data included 83 doctors and 154 nurses. The mean age of the doctors was 46.6 years (range 24–66) and of the nurses 45.2 years (range 22–63). Their mean experience of 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Effects of COPD on sexual life Living will Fague and its symptoms Depression and its management Stress management Palliave care Relaxaon Different rehabilitaon alternaves Importance of social life Social security Search for further informaon Importance of leisure acvies Anxiety and its management Sleep and rest Normal pulmonary anatomy and physiology Long term oxygen therapy (LTOT) Peer support Energy conservaon Correct breathing technique Correct coughing technique Interpretaon of medical tesng* Healthy diet Normal shortness of breath Care of mouth Progression and prognosis of COPD Weight management: overand underweight Infecon prevenon Management of daily tasks How to recognize symptoms of exacerbaon How to manage symptoms of exacerbaon Importance of daily acvity for treatment of COPD Correct inhalaon technique Recognion and treatment of dyspnoea When to seek medical care Vaccinaon Effects of COPD on the lungs and their funcon Benefits and adverse effects of medicaons Importance of exercise for treatment of COPD Pathophysiology and symptoms of COPD When and how to take medicaons Effects of smoking on progression of COPD Smoking cessaon Regularly Somemes On paent request Not at all Figure 1. The regularity of self-management education provided by doctors and nurses in PHC and in SHC (n¼233). Interpretation of the results of spirometry and other physical measurements. SCANDINAVIAN JOURNAL OF PRIMARY HEALTH CARE 49
COPD treatment was 17.3 years (range 0.5–38) and 11.8 years (range 0.5–39), respectively. Almost half of the nurses worked as an asthma/COPD nurse (45.5%, n¼70) and of these, 56.7% (n¼38) worked in SHC. In the whole study population, the best covered content areas of COPD self-management education included medical issues regarding COPD treatment, such as smoking cessation, pharmacological treatment and exercise (Figure 1). However, issues related to coping with the disease, such as stress, depression and fatigue, as well as end-of-life decisions, including palliative care and a living will, were often poorly covered. In general, doctors and nurses emphasised different content areas in their education of COPD patients (Figure 2). Doctors educated more often on the diagnostic procedures and treatment options of COPD, whereas nurses were more active on the practical management of COPD treatment, for example, correct inhalation technique, mouth care or nutrition. As a whole, the nurses were responsible for a wider range of COPD education topics than the doctors, especially in PHC but also in SHC. COPD education was provided more regularly in SHC than in PHC in almost all the content areas, and that applied to both doctors and nurses (Figure 2). Regarding the poorly covered psychosocial aspects of COPD education, nurses, especially those in PHC, were more active than doctors. The patient education provided by the asthma/ COPD nurses (n¼70) was offered more regularly than education provided by the other nurses (n¼84) (Figure 3). When comparing the patient education provided by the asthma/COPD nurses in PHC and SHC, there were differences in the regularity of education, depending on the subject (Figure 4). Discussion Principal findings According to this study, self-management education regularly included medical issues regarding COPD treatment, such as smoking cessation, exercise and pharmacological treatment. However, psychosocial issues vital for coping with the disease, such as psychological well-being, stress and fatigue, were often ignored. Doctors and nurses tended to have their own scopes regarding the contents of patient education. Education in PHC seemed to be less systematic than education in SHC. The asthma/COPD nurses provided education more regularly than the other nurses. Strengths and weaknesses of the study The respondents were obtained using purposeful sampling, because it was impossible to include the doctors and nurses from all the health centres in Finland (n¼160) in this study. The PHC sample was representative based on the healthcare organisations’size and the location in the country but included only nine PHC centres (6% of all PHC centres). The sample of SHC units covered all Finnish pulmonary outpatient clinics in continental Finland, resulting in good response rates from doctors (73% of units) and nurses (90% of units). Consequently, the PHC sample size of this study does not support generalisability. However, the results are indicative, and they add understanding and give reasons for further development and research. Due to a variation among COPD patients in real life, it may have been difficult to evaluate patient education on a general level. Furthermore, the original survey included additional questions regarding the local arrangements of COPD patients’care, which will be reported later. Thus, the questionnaire may have been too long and time-consuming for some potential respondents. Findings in relation to other studies The results of our study showed that doctors and nurses emphasise partially different contents of COPD self-management education, which is a natural consequence of doctors’and nurses’education and job descriptions. Thus, good self-management education requires that both parties know their own responsibilities in patient education and that roles of doctors and nurses is accepted and consistent throughout the whole organisation. Otherwise, it is possible that patient education is coincidental and COPD patients do not receive the education they need. This is noteworthy especially in Finnish PHC, where nurses’ responsibility for COPD patients’self-management education seems to be extensive. In the present study, only a few doctors and nurses regularly educated COPD patients on depression, anxiety, stress or social life. This might be due to lack of knowledge or consultation time, making a holistic approach unrealistic [14–16]. However, psychosocial well-being is interrelated with quality of life [17] and the patients’motivation to engage in self-management [18], and therefore needs the attention of healthcare professionals. Despite good management, COPD is highly symptomatic, especially in the advanced phases of the 50 H. SILTANEN ET AL.
disease [19], and fatigue is one of the most prevalent symptoms [20,21]. Our results are consistent with previous studies showing that fatigue often goes unnoticed by family members as well as healthcare professionals [22,23]. In this study, palliative care was rarely included in the self-management education. Discussing palliative care can be ignored, for example, due to uncertainty regarding the COPD prognosis [24] or a COPD patient’s unwillingness to discuss palliative care [25]. However, discussion about death and palliative care might alleviate COPD patients’fears and offer them an opportunity to plan the rest of their lives [26]. It is noteworthy that COPD patients are less likely to receive palliative care 0 102030405060708090100 Effects of COPD on sexual life Stress management Relaxaon Sleep and rest Fague and its symptoms Search for further informaon Depression and its management Social life in the life of a person with COPD Leisure acvies in the life of a person with COPD Different rehabilitaon alternaves Peer support Living will Anxiety and its management Energy conservaon Normal pulmonary anatomy and physiology Palliave care Care of mouth Healthy diet Social security Long term oxygen therapy (LTOT) Correct coughing technique Correct breathing technique Normal shortness of breath Correct inhalaon technique Weight management: overand underweight Management of daily tasks Infecon prevenon Progression and prognosis of COPD How to recognize symptoms of exacerbaon When to seek medical care Recognaon and treatment of dyspnoea How to manage symptoms of exacerbaon Interpretaon of medical tesng* Benefits and adverse effects of medicaons Importance of daily acvity for treatment of COPD Vaccinaon Importance of exercise for treatment of COPD Pathophysiology and symptoms of COPD Effects of COPD on the lungs and their funcon Effects of smoking on progression of COPD Smoking cessaon When and how to take medicaons Doctors in SHC n=49 Nurses in SHC n=74 Doctors in PHC n=34 Nurses in PHC n=76 Figure 2. The regularity of self-management education provided by doctors (n¼49) and nurses (n¼74) in SHC and doctors (n¼34) and nurses (n¼76) in PHC. Interpretation of the results of spirometry and other physical measurements. SCANDINAVIAN JOURNAL OF PRIMARY HEALTH CARE 51
compared with cancer patients [4]. Thus, the duty of healthcare professionals should be first to provide an opportunity to discuss palliative care early enough and, thereafter, an opportunity for such care. It is obvious that the types of patients (e.g. GOLD stage, multimorbidity) whom healthcare professionals take care of affect the content of COPD education that is provided in PHC and SHC. In this light, some of the results can be seen as a natural consequence of individualised care. For instance, not all COPD patients need education in palliative care or living wills, and the recommended COPD care is often compromised and modified because of multiple health or social issues. 0 102030405060708090100 Effects of COPD on sexual life Living will Palliave care Fague and its symptoms Depression and its management Stress management Interpretaon of medical tesng* Relaxaon Different rehabilitaon alternaves Social security Normal pulmonary anatomy and physiology Long term oxygen therapy (LTOT) Social life in the life of a person with COPD Sleep and rest Anxiety and its management Leisure acvies in the life of a person with COPD Search for further informaon Energy conservaon Correct breathing technique Peer support Progression and prognosis of COPD Correct coughing technique Healthy diet Infecon prevenon Weight management: overand underweight Normal shortness of breath Management of daily tasks How to manage symptoms of exacerbaon Vaccinaon Daily acvity for treatment of COPD Care of mouth When to seek medical care How to recognize symptoms of exacerbaon Effects of COPD on the lungs and their funcon Benefits and adverse effects of medicaons Exercise for treatment of COPD Recognion and treatment of dyspnoea Pathophysiology and symptoms of COPD When and how to take medicaons Correct inhalaon technique Effects of smoking on progression of COPD Smoking cessaon Asthma/COPD nurses n=70 Other nurses n=84 Figure 3. The regularity of self-management education provided by asthma/COPD nurses (n¼70) and nurses who do not work as an asthma/COPD nurse (n¼84). Interpretation of the results of spirometry and other physical measurements. 52 H. SILTANEN ET AL.
In Finland, PHC is in charge of the early detection, diagnosis and management of COPD in all GOLD stages, except for exceptionally young patients or those who have very severe COPD, problems with diagnosis, or those who need LTOT [8]. COPD patients are often multi-morbid, and COPD, as one of the patient’s diseases and complaints, can be deprioritised under the general practitioners’time constraints [15]. It is noteworthy that in Finnish PHC, only one in two patients meets the same doctor when visiting a health centre [27]. Also, a general practitioner’s knowledge of COPD and adherence to current guidelines may be insufficient [14]. In light of these facts, the irregularities in patient education seen in this study in PHC are a cause for concern. According to our study, PHC nurses seemed to be responsible for a larger scope of COPD self-management education than SHC nurses, presumably with lesser support from PHC doctors compared with SHC consultants. Previous research indicates that PHC nurses may lack the knowledge and skills to carry out satisfactory care for COPD patients [16]. Lack of 0 102030405060708090100 Effects of COPD on sexual life Living will Palliave care Fague and its symptoms Long term oxygen therapy (LTOT) Depression and its management Normal pulmonary anatomy and physiology Social security Social life in the life of a person with COPD Stress management Different rehabilitaon alternaves Relaxaon Anxiety and its management Leisure acvies in the life of a person with COPD Sleep and rest Search for further informaon Interpretaon of medical tesng* Energy conservaon Peer support Correct coughing technique Correct breathing technique Healthy diet Normal shortness of breath Progression and prognosis of COPD Infecon prevenon Weight management: overand underweight Daily acvity for treatment of COPD Management of daily tasks Effects of COPD on the lungs and their funcon Benefits and adverse effects of medicaons Care of mouth How to manage symptoms of exacerbaon Vaccinaon When to seek medical care Exercise for treatment of COPD Pathophysiology and symptoms of COPD Recognaon and treatment of dyspnoea How to recognize symptoms of exacerbaon When and how to take medicaons Correct inhalaon technique Smoking cessaon Effects of smoking on progression of COPD Asthma/COPD nurses in PHC n=29 Asthma/COPD nurses in SHC n= 38 Figure 4. The regularity of self-management education provided by asthma/COPD nurses in PHC (n¼29) and in SHC (n¼38). Interpretation of the results of spirometry and other physical measurements. SCANDINAVIAN JOURNAL OF PRIMARY HEALTH CARE 53
support from co-workers can result in the insecurity of nurses and hence make it difficult for them to develop COPD patientseducation [28]. However, previous findings show that with sufficient training, nurse-led asthma/COPD clinics in PHC may result in fewer exacerbations and hospitalisations for COPD patients [29]. In our study, COPD education provided by Finnish asthma/COPD nurses seemed to contain many issues regarded as essential for COPD patients’self-management. Furthermore, the education provided by PHC’s asthma/COPD nurses seemed to be at least as regular as SHC’s asthma/COPD nurses. Thus, our results are consistent with others in showing that establishing nurse-led asthma/COPD clinics in PHC could be beneficial while also improving patient education practices that enhance patients’ability to cope with the disease [29]. Conclusions and implications for practice Each COPD patient should have a regular opportunity to discuss issues vital for self-management with both a doctor and a nurse. Thus, the role of doctors and nurses, especially in PHC, should be considered to ensure that there is no gap in COPD patients’education. Whether in SHC or PHC, patient education should be provided with a holistic approach by doctors and nurses who have up-to-date knowledge and the skills suitable for COPD care. Healthcare professionals’continuing medical education should cover not only the medical but also the psychosocial aspects of coping with the disease. The patient education provided by asthma/COPD nurses, especially in PHC, seems to be encouraging, which should be acknowledged while improving patient education in PHC. Further research should focus on possible gaps between COPD patients’needs and the COPD education provided by healthcare professionals. Acknowledgements The authors want to thank all the doctors and nurses for participating this survey. Ethical approval The study protocol was approved by the ethical committee of Pirkanmaa Hospital District (R16085H). Disclosure statement No potential conflict of interest was reported by the authors. Funding H.S. is funded by Research Foundation of Pulmonary Diseases, Helsinki, Finland. References [1] Lozano R, Naghavi M, Foreman K, et al. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet. 2012;15:2095–2128. [2] Forey BA, Thornton AJ, Lee PN. Systematic review with meta-analysis of the epidemiological evidence relating smoking to COPD, chronic bronchitis and emphysema. BMC Pulm Med. 2011;11(1):36. [3] Pooler A, Beech R. Examining the relationship between anxiety and depression and exacerbations of COPD which result in hospital admission: a systematic review. Int J Chron Obstruct Pulmon Dis. 2014;29: 315–330. [4] GOLD. 2018. Global initiative for chronic obstructive lung disease. Global strategy for the diagnosis, management, and prevention of chronic obstructive pulmonary disease. 2018 Report. [cited 2018 Nov]. Available from: http://goldcopd.org/wp-content/ uploads/2017/11/GOLD-2018-v6.0-FINAL-revised-20Nov_WMS.pdf [5] Zwerink M, Brusse-Keizer M, van der Valk PD, et al. Self-management for patients with chronic obstructive pulmonary disease. Cochrane Database Syst Rev. 2014;CD002990. [6] Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26(1):1–7. [7] Bourbeau J, Nault D, Dang-Tan T. Self-management and behaviour modification in COPD. Patient Educ Couns. 2004;52(3):271–277. [8] Kankaanranta H, Harju T, Kilpelainen M, et al. Diagnosis and pharmacotherapy of stable chronic obstructive pulmonary disease: the Finnish guidelines. Basic Clin Pharmacol Toxicol. 2015;116(4):291–307. [9] Hyland ME, Jones RC, Hanney KE. The lung information needs questionnaire: Development, preliminary validation and findings. Respir Med. 2006;100(10): 1807–1816. [10] White R, Walker P, Roberts S, et al. Bristol COPD Knowledge Questionnaire (BCKQ): testing what we teach patients about COPD. Chron Respir Dis. 2006; 3(3):123–131. [11] Stoilkova A, Janssen DJ, Wouters EF. Educational programmes in COPD management interventions: a systematic review. Respir Med. 2013;107(11):1637–1650. [12] Tan JY, Chen JX, Liu XL, et al. A meta-analysis on the impact of disease-specific education programs on health outcomes for patients with chronic obstructive pulmonary disease. Geriatr Nurs. 2012;33(4):280–296. [13] National Institute for Health and Care Excellence (NICE). Chronic obstructive pulmonary disease overview. [cited 2016 August]. Available from: https:// 54 H. SILTANEN ET AL.