{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,12]],"date-time":"2025-11-12T14:01:48Z","timestamp":1762956108875,"version":"build-2065373602"},"reference-count":54,"publisher":"MDPI AG","issue":"4","license":[{"start":{"date-parts":[[2019,4,24]],"date-time":"2019-04-24T00:00:00Z","timestamp":1556064000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JCM"],"abstract":"<jats:p>The increasing number of patients receiving home respiratory therapy (HRT) is imposing a major impact on routine clinical care and healthcare system sustainability. The current challenge is to continue to guarantee access to HRT while maintaining the quality of care. The patient experience is a cornerstone of high-quality healthcare and an emergent area of clinical research. This review approaches the assessment of the patient experience in the context of HRT while highlighting the European contribution to this body of knowledge. This review demonstrates that research in this area is still limited, with no example of a prescription model that incorporates the patient experience as an outcome and no specific patient-reported experience measures (PREMs) available. This work also shows that Europe is leading the research on HRT provision. The development of a specific PREM and the integration of PREMs into the assessment of prescription models should be clinical research priorities in the next several years.<\/jats:p>","DOI":"10.3390\/jcm8040555","type":"journal-article","created":{"date-parts":[[2019,4,25]],"date-time":"2019-04-25T03:02:59Z","timestamp":1556161379000},"page":"555","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":18,"title":["Patient Experience in Home Respiratory Therapies: Where We Are and Where to Go"],"prefix":"10.3390","volume":"8","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3735-8554","authenticated-orcid":false,"given":"C\u00e1tia","family":"Caneiras","sequence":"first","affiliation":[{"name":"Institute of Environmental Health (ISAMB), Faculty of Medicine, Universidade de Lisboa, 1649-028 Lisboa, Portugal"},{"name":"Healthcare Department, Praxair Portugal Gases, 2601-906 Lisboa, Portugal"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1151-8791","authenticated-orcid":false,"given":"Cristina","family":"J\u00e1come","sequence":"additional","affiliation":[{"name":"CINTESIS-Center for Health Technologies and Information Systems Research, Faculty of Medicine, University of Porto, 4200-450 Porto, Portugal"},{"name":"Respiratory Research and Rehabilitation Laboratory (Lab3R), School of Health Sciences (ESSUA), University of Aveiro, 3810-193 Aveiro, Portugal"}]},{"given":"Sagrario","family":"Mayoralas-Alises","sequence":"additional","affiliation":[{"name":"Service of Pneumology, Hospital Universitario Moncloa, 28008 Madrid, Spain"},{"name":"Healthcare Department, Praxair Spain, 28020 Madrid, Spain"}]},{"given":"Jos\u00e9","family":"Ramon Calvo","sequence":"additional","affiliation":[{"name":"Healthcare Department, Praxair Spain, 28020 Madrid, Spain"}]},{"given":"Jo\u00e3o","family":"Almeida Fonseca","sequence":"additional","affiliation":[{"name":"CINTESIS-Center for Health Technologies and Information Systems Research, Faculty of Medicine, University of Porto, 4200-450 Porto, Portugal"},{"name":"MEDCIDS-Department of Community Medicine, Health Information and Decision, Faculty of Medicine, University of Porto, 4200-450 Porto, Portugal"},{"name":"Allergy Unit, Instituto and Hospital CUF, 4460-188 Porto, Portugal"}]},{"given":"Joan","family":"Escarrabill","sequence":"additional","affiliation":[{"name":"Hospital Cl\u00ednic de Barcelona, 08036 Barcelona, Spain"},{"name":"Master Plan for Respiratory Diseases (Ministry of Health) &amp; Observatory of Home Respiratory Therapies (FORES), 08028 Barcelona, Spain"},{"name":"REDISSEC Health Services Research on Chronic Patients Network, Instituto de Salud Carlos III, 28029 Madrid, Spain"}]},{"given":"Jo\u00e3o Carlos","family":"Winck","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, University of Porto, 4200-319 Porto, Portugal"}]}],"member":"1968","published-online":{"date-parts":[[2019,4,24]]},"reference":[{"key":"ref_1","first-page":"CD001744","article-title":"Domiciliary oxygen for chronic obstructive pulmonary disease","volume":"4","author":"Cranston","year":"2005","journal-title":"Cochrane Database Syst. Rev."},{"key":"ref_2","first-page":"CD001941","article-title":"Nocturnal mechanical ventilation for chronic hypoventilation in patients with neuromuscular and chest wall disorders","volume":"12","author":"Annane","year":"2014","journal-title":"Cochrane Database Syst. Rev."},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"481","DOI":"10.1016\/S0873-2159(15)31124-7","article-title":"Alguns dados sobre a Assist\u00eancia Respirat\u00f3ria Domicili\u00e1ria em Portugal","volume":"3","author":"Melo","year":"1997","journal-title":"Rev. Port. Pneumol."},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"545","DOI":"10.1016\/S0300-2896(15)30095-8","article-title":"Estado actual de la ventilaci\u00f3n mec\u00e1nica domiciliaria en Espa\u00f1a: Resultados de una encuesta de \u00e1mbito nacional","volume":"36","year":"2000","journal-title":"Arch. Bronconeumol."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"1025","DOI":"10.1183\/09031936.05.00066704","article-title":"Patterns of home mechanical ventilation use in Europe: Results from the Eurovent survey","volume":"25","author":"Donaldson","year":"2005","journal-title":"Eur. Respir. J."},{"key":"ref_6","unstructured":"World Health Organization (2019, April 11). What is Quality of Care and Why Is It Important?. Available online: http:\/\/www.who.int\/maternal_child_adolescent\/topics\/quality-of-care\/definition\/en\/."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"2035","DOI":"10.1513\/AnnalsATS.201606-454FR","article-title":"Home Mechanical Ventilation: An Overview","volume":"13","author":"Simonds","year":"2016","journal-title":"Ann. Am. Thorac. Soc."},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"2229","DOI":"10.1185\/03007995.2010.508703","article-title":"Effects of long-term non-invasive home mechanical ventilation on chronic respiratory failure","volume":"26","author":"Dogan","year":"2010","journal-title":"Curr. Med. Res. Opin."},{"key":"ref_9","unstructured":"NHS Department of Health (2019, April 11). High Quality Care for All: NHS Next Stage Review Final Report, Available online: https:\/\/assets.publishing.service.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/228836\/7432.pdf."},{"key":"ref_10","doi-asserted-by":"crossref","unstructured":"OECD\/EU (2019, April 11). Health at a Glance: Europe 2018: State of Health in the EU Cycle. Available online: https:\/\/doi.org\/10.1787\/health_glance_eur-2018-en.","DOI":"10.1787\/health_glance_eur-2018-en"},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"e001570","DOI":"10.1136\/bmjopen-2012-001570","article-title":"A systematic review of evidence on the links between patient experience and clinical safety and effectiveness","volume":"3","author":"Doyle","year":"2013","journal-title":"BMJ Open"},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"695","DOI":"10.4187\/respcare.03609","article-title":"Home mechanical ventilation in Canada: A national survey","volume":"60","author":"Rose","year":"2015","journal-title":"Respir. Care"},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"490","DOI":"10.1016\/j.arbres.2014.11.018","article-title":"Variability in home mechanical ventilation prescription","volume":"51","author":"Escarrabill","year":"2015","journal-title":"Arch. Bronconeumol."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"577","DOI":"10.4187\/respcare.03126","article-title":"The evolution of home mechanical ventilation in poland between 2000 and 2010","volume":"60","author":"Nasilowski","year":"2015","journal-title":"Respir. Care"},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"39","DOI":"10.1183\/09031936.00206311","article-title":"Home mechanical ventilation in Australia and New Zealand","volume":"41","author":"Garner","year":"2013","journal-title":"Eur. Respir. J."},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"880","DOI":"10.1136\/thoraxjnl-2013-203566","article-title":"Provision of home mechanical ventilation and sleep services for England survey","volume":"68","author":"Mandal","year":"2013","journal-title":"Thorax"},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"136","DOI":"10.1183\/09031936.03.00017803","article-title":"Home mechanical ventilation in Hong Kong","volume":"23","author":"Chu","year":"2004","journal-title":"Eur. Respir. J."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"119","DOI":"10.1002\/ppul.10237","article-title":"Long-term noninvasive mechanical ventilation for children at home: A national survey","volume":"35","author":"Fauroux","year":"2003","journal-title":"Pediatr. Pulmonol."},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"1721","DOI":"10.1183\/09031936.94.07091721","article-title":"Home treatment for chronic respiratory insufficiency: The situation in Europe in 1992. The European Working Group on Home Treatment for Chronic Respiratory Insufficiency","volume":"7","author":"Fauroux","year":"1994","journal-title":"Eur. Respir. J."},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"3159","DOI":"10.2147\/COPD.S140264","article-title":"A nationwide structure for valid long-term oxygen therapy: 29-year prospective data in Sweden","volume":"12","author":"Ekstrom","year":"2017","journal-title":"Int. J. Chron. Obstruct. Pulmon. Dis."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"511","DOI":"10.1016\/j.rmed.2013.10.025","article-title":"Trends in long-term oxygen therapy for COPD in Denmark from 2001 to 2010","volume":"108","author":"Ringbaek","year":"2014","journal-title":"Respir. Med."},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"549","DOI":"10.5694\/j.1326-5377.2009.tb03308.x","article-title":"Variability in the rate of prescription and cost of domiciliary oxygen therapy in Australia","volume":"191","author":"Serginson","year":"2009","journal-title":"Med. J. Aust."},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"632","DOI":"10.5694\/j.1326-5377.2007.tb01081.x","article-title":"Domiciliary oxygen therapy services in Tasmania: Prescription, usage and impact of a specialist clinic","volume":"186","author":"Jones","year":"2007","journal-title":"Med. J. Aust."},{"key":"ref_24","doi-asserted-by":"crossref","first-page":"909","DOI":"10.1183\/09031936.01.00202301","article-title":"International approaches to the prescription of long-term oxygen therapy","volume":"18","author":"Wijkstra","year":"2001","journal-title":"Eur. Respir. J."},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"1829","DOI":"10.1016\/S0277-9536(97)00128-7","article-title":"Patient satisfaction: A review of issues and concepts","volume":"45","author":"Sitzia","year":"1997","journal-title":"Soc. Sci. Med."},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"691","DOI":"10.1111\/j.1468-0009.2005.00397.x","article-title":"Evaluating the Quality of Medical Care","volume":"83","author":"Donabedian","year":"2005","journal-title":"Milbank Q."},{"key":"ref_27","doi-asserted-by":"crossref","first-page":"925","DOI":"10.1001\/jama.1989.03430070073033","article-title":"The Medical Outcomes Study. An application of methods for monitoring the results of medical care","volume":"262","author":"Tarlov","year":"1989","journal-title":"JAMA"},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"358","DOI":"10.1183\/20734735.006813","article-title":"Towards an understanding of PREMS and PROMS in COPD","volume":"9","author":"Hodson","year":"2013","journal-title":"Breathe"},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"13","DOI":"10.5334\/ijic.2443","article-title":"Development and Validation of an Instrument for Assessing Patient Experience of Chronic Illness Care","volume":"16","author":"Mira","year":"2016","journal-title":"Int. J. Integr. Care"},{"key":"ref_30","unstructured":"Hodson, M. (2018). Development of a Patient Reported Experience Measure in Chronic Obstructive Pulmonary Disease (COPD). [Ph.D. Thesis, University of Portsmouth]."},{"key":"ref_31","doi-asserted-by":"crossref","unstructured":"Sjetne, I.S., Bjertnaes, O.A., Olsen, R.V., Iversen, H.H., and Bukholm, G. (2011). The Generic Short Patient Experiences Questionnaire (GS-PEQ): Identification of core items from a survey in Norway. BMC Health Serv. Res., 11.","DOI":"10.1186\/1472-6963-11-88"},{"key":"ref_32","doi-asserted-by":"crossref","unstructured":"Benson, T., and Potts, H.W. (2014). A short generic patient experience questionnaire: howRwe development and validation. BMC Health Serv. Res., 14.","DOI":"10.1186\/s12913-014-0499-z"},{"key":"ref_33","doi-asserted-by":"crossref","unstructured":"Fernstrom, K.M., Shippee, N.D., Jones, A.L., and Britt, H.R. (2016). Development and validation of a new patient experience tool in patients with serious illness. BMC Palliat. Care, 15.","DOI":"10.1186\/s12904-016-0172-x"},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1007\/s11606-007-0452-5","article-title":"Patient Assessment of Chronic Illness Care (PACIC) and improved patient-centered outcomes for chronic conditions","volume":"23","author":"Schmittdiel","year":"2008","journal-title":"J. Gen. Intern. Med."},{"key":"ref_35","first-page":"93","article-title":"Health Services OutPatient Experience questionnaire: Factorial validity and reliability of a patient-centered outcome measure for outpatient settings in Italy","volume":"5","author":"Coluccia","year":"2014","journal-title":"Patient Relat. Outcome Meas."},{"key":"ref_36","doi-asserted-by":"crossref","first-page":"e010101","DOI":"10.1136\/bmjopen-2015-010101","article-title":"Development and preliminary psychometric properties of the Care Experience Feedback Improvement Tool (CEFIT)","volume":"6","author":"Beattie","year":"2016","journal-title":"BMJ Open"},{"key":"ref_37","doi-asserted-by":"crossref","first-page":"52","DOI":"10.1177\/1937586716636841","article-title":"Preliminary Development of a Multidimensional Semantic Patient Experience Measurement Questionnaire","volume":"10","author":"Kleiss","year":"2016","journal-title":"Herd"},{"key":"ref_38","doi-asserted-by":"crossref","first-page":"453","DOI":"10.1093\/intqhc\/mzh074","article-title":"The Patient Experiences Questionnaire: Development, validity and reliability","volume":"16","author":"Pettersen","year":"2004","journal-title":"Int. J. Qual. Health Care"},{"key":"ref_39","doi-asserted-by":"crossref","first-page":"410","DOI":"10.1093\/fampra\/18.4.410","article-title":"A new, brief questionnaire (PEQ) developed in primary health care for measuring patients\u2019 experience of interaction, emotion and consultation outcome","volume":"18","author":"Steine","year":"2001","journal-title":"Fam. Pract."},{"key":"ref_40","doi-asserted-by":"crossref","first-page":"1666","DOI":"10.1007\/s11606-008-0732-8","article-title":"Physician effects on racial and ethnic disparities in patients\u2019 experiences of primary care","volume":"23","author":"Rodriguez","year":"2008","journal-title":"J. Gen. Intern. Med."},{"key":"ref_41","doi-asserted-by":"crossref","first-page":"667","DOI":"10.1093\/ageing\/afv014","article-title":"A Patient Reported Experience Measure (PREM) for use by older people in community services","volume":"44","author":"Teale","year":"2015","journal-title":"Age Ageing"},{"key":"ref_42","doi-asserted-by":"crossref","first-page":"00015","DOI":"10.1183\/23120541.00015-2017","article-title":"Attitudes and preferences of home mechanical ventilation users from four European countries: An ERS\/ELF survey","volume":"3","author":"Masefield","year":"2017","journal-title":"ERJ Open Res."},{"key":"ref_43","doi-asserted-by":"crossref","unstructured":"Hendriks, S.H., Rutgers, J., van Dijk, P.R., Groenier, K.H., Bilo, H.J.G., Kleefstra, N., Kocks, J.W.H., van Hateren, K.J.J., and Blanker, M.H. (2015). Validation of the howRu and howRwe questionnaires at the individual patient level. BMC Health Serv. Res., 15.","DOI":"10.1186\/s12913-015-1093-8"},{"key":"ref_44","doi-asserted-by":"crossref","first-page":"436","DOI":"10.1097\/01.mlr.0000160375.47920.8c","article-title":"Development and validation of the Patient Assessment of Chronic Illness Care (PACIC)","volume":"43","author":"Glasgow","year":"2005","journal-title":"Med. Care"},{"key":"ref_45","doi-asserted-by":"crossref","first-page":"271","DOI":"10.1007\/s40271-015-0150-z","article-title":"Patient Involvement in the Design of a Patient-Centered Clinical Trial to Promote Adherence to Supplemental Oxygen Therapy in COPD","volume":"9","author":"Holm","year":"2016","journal-title":"Patient"},{"key":"ref_46","doi-asserted-by":"crossref","first-page":"131","DOI":"10.1016\/j.arbres.2015.02.009","article-title":"Aproximaci\u00f3n a la experiencia del paciente y sus cuidadores en la oxigenoterapia domiciliaria","volume":"52","author":"Chiner","year":"2016","journal-title":"Arch. Bronconeumol."},{"key":"ref_47","doi-asserted-by":"crossref","first-page":"67","DOI":"10.1080\/15402002.2014.946597","article-title":"Patient and partner experiences with obstructive sleep apnea and CPAP treatment: A qualitative analysis","volume":"14","author":"Luyster","year":"2016","journal-title":"Behav. Sleep Med."},{"key":"ref_48","doi-asserted-by":"crossref","first-page":"371","DOI":"10.1016\/j.colegn.2016.08.002","article-title":"Making choices about CPAP: Findings from a grounded theory study about living with CPAP","volume":"24","author":"Ward","year":"2017","journal-title":"Collegian"},{"key":"ref_49","doi-asserted-by":"crossref","first-page":"140","DOI":"10.1071\/HC17072","article-title":"From diagnosis to long-term treatment: The experiences of older New Zealanders with obstructive sleep apnoea","volume":"2","author":"Gibson","year":"2018","journal-title":"J. Prim. Health Care."},{"key":"ref_50","doi-asserted-by":"crossref","first-page":"268","DOI":"10.1177\/0269216314558327","article-title":"Adapting to domiciliary non-invasive ventilation in chronic obstructive pulmonary disease: A qualitative interview study","volume":"29","author":"Gale","year":"2015","journal-title":"Palliat. Med."},{"key":"ref_51","doi-asserted-by":"crossref","first-page":"126","DOI":"10.1016\/j.sleep.2009.04.010","article-title":"Putative facilitators and barriers for adherence to CPAP treatment in patients with obstructive sleep apnea syndrome: A qualitative content analysis","volume":"11","author":"Brostrom","year":"2010","journal-title":"Sleep Med."},{"key":"ref_52","doi-asserted-by":"crossref","first-page":"1021","DOI":"10.2147\/COPD.S155622","article-title":"Support needs of patients with COPD: A systematic literature search and narrative review","volume":"13","author":"Gardener","year":"2018","journal-title":"Int. J. Chron. Obstruct. Pulmon. Dis."},{"key":"ref_53","doi-asserted-by":"crossref","first-page":"325362","DOI":"10.1155\/2011\/325362","article-title":"Long-Term Oxygen Therapy in COPD: Factors Affecting and Ways of Improving Patient Compliance","volume":"2011","author":"Katsenos","year":"2011","journal-title":"Pulm. Med."},{"key":"ref_54","unstructured":"Fujisawa, R., and Klazinga, N.S. (2017). Measuring patient experiences (PREMS): Progress made by the OECD and its member countries between 2006 and 2016. OECD Health Work. Pap."}],"container-title":["Journal of Clinical Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2077-0383\/8\/4\/555\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,11]],"date-time":"2025-10-11T12:46:49Z","timestamp":1760186809000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2077-0383\/8\/4\/555"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,4,24]]},"references-count":54,"journal-issue":{"issue":"4","published-online":{"date-parts":[[2019,4]]}},"alternative-id":["jcm8040555"],"URL":"https:\/\/doi.org\/10.3390\/jcm8040555","relation":{},"ISSN":["2077-0383"],"issn-type":[{"type":"electronic","value":"2077-0383"}],"subject":[],"published":{"date-parts":[[2019,4,24]]}}}