Patient experience with home respiratory therapies in Portugal : it is time to move forward

Pulmonol. 2019;25(6):311---312 www.journalpulmonology.org EDITORIAL Patient experience with home respiratory therapies in Portugal: it is time to move forward The number of patients needing home respiratory therapies (HRT), such as long-term oxygen therapy and/or home mechanical ventilation (HMV) in Portugal is increasing.1 --- 3 These therapies help individuals to improve function and live with greater quality of life; and assist them to remain at home, avoiding hospital emergencies, unscheduled consultations and hospitalizations.4Data from a recently published work confirms this increasing trend: in 2018, almost 80% of the HMV specialized centres were treating >30 new patients per year, currently treating >200 patients in total.5Moreover, the director of the National Program for Respiratory Diseases, based on the prescription database, showed that in 2017 the prevalence rose to a record of 80/100.000, very close to France, the country with the highest figures in Europe (C Bárbara 2019, personal communication, May 30th, Jornadas de Pneumologia CH Entre Douro e Vouga). An innovative national, patient-centred care home respiratory model was implemented in Portugal in 20146and the major challenges are to create key performance indicators in order to maintain the access to HRT, national healthcare service sustainability and quality of care. Patient experience is increasingly recognised as one of the three pillars of quality in healthcare together with clinical effectiveness and safety7and includes several aspects of health care delivery that patients value highly when seeking and receiving care, such as getting timely appointments, easy access to information, and good communication with healthcare providers.8An example of the importance of integrating the patient experience with healthcare delivery and quality evaluation is the inclusion for the first time of a dedicated chapter in the OECD (Organisation for Economic Co-operation and Development) and the European Commission report ‘‘Health at a Glance: Europe’’9despite the recognition of patient-reported experience is still limited.9 In national health reference documents, the concept of patient experience is quite new. According to the Administrative Rule n.o194/2014 of September 30th, the existence of a monitoring system for the patient’s experience was defined as one of the criterion needed for healthcare units be considered as reference centres (units providing healthcare, with verified technical knowledge on the administration of high quality health care to patients in certain clinical situations). In 2015, an OECD report reviewing the quality of health care in Portugal, already concerned with capturing and reporting patient experience, identified the national mechanisms to collect patient feedback as being weak.10 Nevertheless, the integration of patient experience seems to continue to be left out of relevant documents concerned with respiratory diseases management and specifically with HRT. This is a concern not restricted to Portugal. In fact, in a recent review conducted by the authors, from the 15 studies assessing the prescription of HRT, none have included the patient experience as an outcome.11 Portugal was one of the countries with highest prevalence of HMV in Europe (9.3 per 100,000 people) according to 2001 Eurovent survey.2Considering this study took place almost 18 years ago, the current analysis of the data gathered by national HRT registers would be extremely useful to inform evidence-based healthcare policies. Reference documents need to do more than advocate the importance of measuring patient experience. Healthcare providers, administrators and policy-makers need to know which tools are available for collecting patients’ perceptions of healthcare provision and understand how they can be used to improve healthcare quality. The aforementioned review briefly described 14 patient-reported experience measures (PREMs).11 Unfortunately, these PREMS were mostly generic and targeting diverse settings, and none was specific to assessing the patient experience with HRT. The translation/cultural adaptation of existent PREMs to the Portuguese population and/or the development of a specific PREM for patients on HRT should thus be a priority. These instruments could then be used to monitor patient experience and be integrated as quality indicators of HRT delivery. A number of key-points facilitating patient’s treatment experience with HRT have already been identified as relevant for inclusion in a future PREM,11 however, this knowledge comes mainly from international studies.12,13 Studies exploring which topics are meaningful for Portuguese patients and carers are needed. This letter shows that the contribution of Portugal to the research of patient experience and HRT provision has been https://doi.org/10.1016/j.pulmoe.2019.08.003 2531-0437/© 2019 Sociedade Portuguesa de Pneumologia. Published by Elsevier Espa˜ na, S.L.U. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). 312 EDITORIAL limited and raises further ways of moving forward in this emerging research area in the next few years. But most importantly, this letter underlines the need to go beyond Patient Reported Outcome Measures (PROMS) and create and integrate patient experience indicators ---- PREMs ---- into evaluation of the performance of healthcare services, including the national patient-centred care home respiratory model. Funding C.J. has a post-doctoral grant (SFRH/BPD/115169/2016) funded by Fundac¸ão para a Ciência e a Tecnologia (FCT), co-financed by the European Social Fund (POCH) and Portuguese national funds from MCTES (Ministério da Ciência, Tecnologia e Ensino Superior). Declarations of interest None. References 1. Melo I. Alguns dados sobre a Assistência Respiratória Domiciliária em Portugal. Rev Port Pneumol. 1997;3(5):481---92. 2. Lloyd-Owen SJ, Donaldson GC, Ambrosino N, Escarabill J, Farre R, Fauroux B, et al. Patterns of home mechanical ventilation use in Europe: results from the Eurovent survey. Eur Respir J. 2005;25(6):1025---31. 3. Winck JC on behalf of the HMV Sub-group of the Respiratory Rehabilitation Committee of the SPP. Normas e Recomendac¸ões da Ventiloterapia domiciliária [in Portuguese]. Rev Port Pneumol. 1998;4(5):447---78. 4. Shaughnessy PW, Hittle DF, Crisler KS, Powell MC, Richard AA, Kramer AM, et al. Improving patient outcomes of home health care: findings from two demonstration trials of outcome-based quality improvement. J Am Geriatr Soc. 2002;50(8):1354---64. 5. Mineiro MA, Guimarães MJ, Winck JC. Organization of home mechanical ventilation in portugal: characterization of current centers and a pathway to uniformization. Pulmonology. 2019, http://dx.doi.org/10.1016/j.pulmoe.2019.05.006, pii: S25310437(19)30098-4 [Epub ahead of print]. 6. Caneiras C, Mayoralas-Alyses S, Calvo J, Escarrabil J, Winck JC. Organization and practice of home respiratory care in Portugal and Spain: an exploratory study between different care models. Proceedings of the 15th International Conference on Home Mechanical Ventilation (JIVD) & 6th European Respiratory Care Association Congress (ERCA). 2018:60---1. Available at: http://jivd-france.com/jivd/pdf/Brochure 20p AN BD.pdf. Last accessed on 23rd July 2019. 7. Institute of Medicine Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington (DC): National Academies Press (US) Copyright 2001 by the National Academy of Sciences. All rights reserved; 2001. 8. What Is Patient Experience? Content last reviewed March, Rockville, MD. Availabe online: https://www.ahrq.gov/cahps/ about-cahps/patient-experience/index.html (accessed on April 11th, 2019) Agency for Healthcare Research and Quality; 2017. 9. OECD/EU. Health at a Glance: Europe 2018: State of Health in the EU Cycle. Paris: OECD Publishing; 2018. Availabe online: https://doi.org/10.1787/health glance eur-2018-en (accessed on April 11th, 2019). 10. OECD. OECD Reviews of Health Care Quality: Portugal 2015: Raising Standards. Paris: OECD Publishing; 2015. Available online: https://doi.org/10.1787/9789264225985-en (accessed on April 11th, 2019). 11. Caneiras C, Jácome C, Mayoralas-Alises S, Ramon Calvo J, Almeida Fonseca J, Escarrabill J, et al. Patient experience in home respiratory therapies: where we are and where to go. J Clin Med. 2019;8(4):555. 12. Mayoralas Alises S, Caneiras C, Díaz-Lobato S. A telephonebased survey of current trends, habits and beliefs in patients receiving portable oxygen therapy in Madrid, Spain. ERJ Open Res. 2019;5(2), 00059-2018. 13. Gardener AC, Ewing G, Kuhn I, Farquhar M. Support needs of patients with COPD: a systematic literature search and narrative review. Int J Chron Obstruct Pulmon Dis. 2018;13:1021---35. Cátia Caneirasa,b,∗,1, Cristina Jácomec,d,1, Sagrario Mayoralas-Alisese, José Ramon-Calvof, João Almeida Fonsecac,g,h, Salvador Diaz-Lobatof,i, Joan Escarrabillj,k,l, João Carlos Winckm aInstitute of Environmental Health (ISAMB), Faculty of Medicine, University of Lisbon, 1649-028 Lisbon, Portugal bHealthcare Department, Nippon Gases Portugal, 2600-242 Vila Franca de Xira, Portugal cCINTESIS-Center for Health Technology and Services Research, Faculty of Medicine, University of Porto, 4200-450 Porto, Portugal dRespiratory Research and Rehabilitation Laboratory (Lab3R), School of Health Sciences (ESSUA), University of Aveiro, 3810-193 Aveiro, Portugal eHealthcare Management Department, Hospital Quirón Salud San José, 28002 Madrid, Spain fHealthcare Department, Nippon Gases Spain, 28020 Madrid, Spain gMEDCIDS - Department of Community Medicine, Health Information and Decision, Faculty of Medicine, University of Porto, 4200-450 Porto, Portugal hAllergy Unit, Instituto and Hospital CUF, 4460-188 Porto, Portugal iService of Pneumology, Hospital Universitario Moncloa, 28008 Madrid, Spain jHospital Clínic de Barcelona, 08036 Barcelona, Spain kMaster Plan for Respiratory Diseases (Ministry of Health) & Observatory of Home Respiratory Therapies (FORES), 08028 Barcelona, Spain lREDISSEC Health Services Research on Chronic Patients Network, Instituto de Salud Carlos III, 28029 Madrid, Spain mFaculty of Medicine, University of Porto, 4200-319 Porto, Portugal ∗Corresponding author at: Healthcare Department, Nippon Gases Portugal, 2600-242 Vila Franca de Xira, Portugal. E-mail addresses: [email protected] (C. Caneiras), [email protected] (C. Jácome), [email protected] (S. Mayoralas-Alises), [email protected] (J. Ramon-Calvo), [email protected] (J.A. Fonseca), [email protected] (S. Diaz-Lobato), [email protected] (J. Escarrabill), [email protected] (J.C. Winck). 1These authors contributed equally to this work. 19 July 2019 Available online 26 September 2019