Development of a unified system for assessing health related quality of life across the cancer care continuum: the EUonQoL Delphi study to identify priorities for quality of life domains
Abstract Introduction Cancer and cancer treatment have a major impact on health related quality of life (HRQoL). To improve the assessment of HRQoL in patients with cancer and evaluate the impact of policy interventions, the European Oncology Quality of Life (EUonQoL) project aims at developing a di...
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SpringerOpen
2025-06-01
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| Series: | Journal of Patient-Reported Outcomes |
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| Online Access: | https://doi.org/10.1186/s41687-025-00907-z |
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| author | Maike G. Sweegers Esther de Jongh Christopher Bedding Emma Nicklin Daniela Doege Sara Alfieri Laura Gangeri Bianca Scacciati Augusto Caraceni Cinzia Brunelli Anne Bredart Leslye Rojas-Concha Helle Pappot Giovanni Apolone Nanne Bos Gennaro Ciliberto Norbert Couespel Montse Ferrer Stein Kaasa Claudio Lombardo Ricardo Pietrobon Gabriella Pravettoni Aude Sirven Hugo Vachon Mogens Groenvold Maria Alice Franzoi Galina Velikova Alexandra Gilbert Lonneke V. van de Poll-Franse |
| author_facet | Maike G. Sweegers Esther de Jongh Christopher Bedding Emma Nicklin Daniela Doege Sara Alfieri Laura Gangeri Bianca Scacciati Augusto Caraceni Cinzia Brunelli Anne Bredart Leslye Rojas-Concha Helle Pappot Giovanni Apolone Nanne Bos Gennaro Ciliberto Norbert Couespel Montse Ferrer Stein Kaasa Claudio Lombardo Ricardo Pietrobon Gabriella Pravettoni Aude Sirven Hugo Vachon Mogens Groenvold Maria Alice Franzoi Galina Velikova Alexandra Gilbert Lonneke V. van de Poll-Franse |
| author_sort | Maike G. Sweegers |
| collection | DOAJ |
| description | Abstract Introduction Cancer and cancer treatment have a major impact on health related quality of life (HRQoL). To improve the assessment of HRQoL in patients with cancer and evaluate the impact of policy interventions, the European Oncology Quality of Life (EUonQoL) project aims at developing a digital, patient centred system to assess HRQoL based on evaluations and preferences of cancer patients and survivors: the EUonQoL-kit. Method Patients across the cancer care continuum, healthcare professionals and researchers from six European countries (Denmark, France, Germany, Italy, The Netherlands and United Kingdom) were asked to rate the importance of 44 pre-selected HRQoL subdomains over a maximum of three Delphi survey rounds. We evaluated the importance of HRQoL subdomains for three target populations: patients undergoing active treatment, cancer survivors and patients receiving palliative care. The results were discussed during a consensus meeting. Results 96 patients and 59 healthcare professionals participated in the Delphi study. After three rounds, consensus was reached for 20 subdomains: ability to work, communication with healthcare professionals, diarrhoea, fatigue, fear of recurrence, global health status, impact of treatment side effects, impact on children/family, insomnia, instrumental activities of daily living, maintaining independence, mobility, nausea, overall quality of life, pain, partner relationship, social activity limitations, social isolation, symptom awareness and uncertain prognosis. The subdomains pain and fear of recurrence were rated as important for all three target populations. Conclusion Subdomains that were considered important for the assessment of HRQoL in patients with cancer can be summarised into: physical symptoms, mobility & activity, future outlook, social roles & activities, family & relationships, social isolation, self-efficacy, overall HRQoL, and healthcare experience. The importance of the subdomains differed for patients in different phases of the cancer care continuum. These findings were used for the creation of the first version of the EUonQoL-Kit, as a base for its further development. |
| format | Article |
| id | doaj-art-7fbcdc215dfb4427a5586098dfbce753 |
| institution | OA Journals |
| issn | 2509-8020 |
| language | English |
| publishDate | 2025-06-01 |
| publisher | SpringerOpen |
| record_format | Article |
| series | Journal of Patient-Reported Outcomes |
| spelling | doaj-art-7fbcdc215dfb4427a5586098dfbce7532025-08-20T02:10:35ZengSpringerOpenJournal of Patient-Reported Outcomes2509-80202025-06-019111210.1186/s41687-025-00907-zDevelopment of a unified system for assessing health related quality of life across the cancer care continuum: the EUonQoL Delphi study to identify priorities for quality of life domainsMaike G. Sweegers0Esther de Jongh1Christopher Bedding2Emma Nicklin3Daniela Doege4Sara Alfieri5Laura Gangeri6Bianca Scacciati7Augusto Caraceni8Cinzia Brunelli9Anne Bredart10Leslye Rojas-Concha11Helle Pappot12Giovanni Apolone13Nanne Bos14Gennaro Ciliberto15Norbert Couespel16Montse Ferrer17Stein Kaasa18Claudio Lombardo19Ricardo Pietrobon20Gabriella Pravettoni21Aude SirvenHugo Vachon22Mogens Groenvold23Maria Alice Franzoi24Galina Velikova25Alexandra Gilbert26Lonneke V. van de Poll-Franse27Division of Psychosocial Research and Epidemiology, The Netherlands Cancer InstituteDivision of Psychosocial Research and Epidemiology, The Netherlands Cancer InstituteLeeds Institute of Medical Research at St James’s, University of LeedsLeeds Institute of Medical Research at St James’s, University of LeedsUnit of Cancer Survivorship, Division of Clinical Epidemiology and Aging Research, German Cancer Research Center (DKFZ)Clinical Psychology Unit, Fondazione IRCCS Istituto Nazionale dei TumoriClinical Psychology Unit, Fondazione IRCCS Istituto Nazionale dei TumoriClinical Psychology Unit, Fondazione IRCCS Istituto Nazionale dei TumoriUniversità degli studi di Milano Dipartimento di Scienze Cliniche e di Comunità, Dipartimento di Eccellenza, 2023-2027Palliative Care, Pain Therapy and Rehabilitation Unit, Fondazione IRCCS Istituto Nazionale Tumori-MilanoPsycho-Oncology Unit, Institut CuriePalliative Care Research Unit, Department of Geriatrics and Palliative Medicine GP, Copenhagen University Hospital - Bispebjerg and Frederiksberg, University of CopenhagenDepartment of Oncology, Copenhagen University Hospital – Rigshospitalet, Institute of Clinical Medicine, University of CopenhagenScientific Directorate, Fondazione IRCCS Istituto Nazionale Dei Tumori (INT)Netherlands Institute for Health Services Research (Nivel)IRCCS National Cancer Center “Regina Elena”, on Behalf of DIGICOREEuropean Cancer Organisation (ECO)Health Services Research Group, Hospital del Mar Research InstituteOslo Universitetssykehus HF (OUS)Organisation of European Cancer Institutes (OECI)SporeData OÜIstituto Europeo Di Oncologia IRCCSEuropean Organisation for Research & Treatment of Cancer, Quality of Life DepartmentPalliative Care Research Unit, Department of Geriatrics and Palliative Medicine GP, Copenhagen University Hospital - Bispebjerg and Frederiksberg, University of CopenhagenCancer Survivorship Group, Inserm U981Leeds Institute of Medical Research at St James’s, University of LeedsLeeds Institute of Medical Research at St James’s, University of LeedsDivision of Psychosocial Research and Epidemiology, The Netherlands Cancer InstituteAbstract Introduction Cancer and cancer treatment have a major impact on health related quality of life (HRQoL). To improve the assessment of HRQoL in patients with cancer and evaluate the impact of policy interventions, the European Oncology Quality of Life (EUonQoL) project aims at developing a digital, patient centred system to assess HRQoL based on evaluations and preferences of cancer patients and survivors: the EUonQoL-kit. Method Patients across the cancer care continuum, healthcare professionals and researchers from six European countries (Denmark, France, Germany, Italy, The Netherlands and United Kingdom) were asked to rate the importance of 44 pre-selected HRQoL subdomains over a maximum of three Delphi survey rounds. We evaluated the importance of HRQoL subdomains for three target populations: patients undergoing active treatment, cancer survivors and patients receiving palliative care. The results were discussed during a consensus meeting. Results 96 patients and 59 healthcare professionals participated in the Delphi study. After three rounds, consensus was reached for 20 subdomains: ability to work, communication with healthcare professionals, diarrhoea, fatigue, fear of recurrence, global health status, impact of treatment side effects, impact on children/family, insomnia, instrumental activities of daily living, maintaining independence, mobility, nausea, overall quality of life, pain, partner relationship, social activity limitations, social isolation, symptom awareness and uncertain prognosis. The subdomains pain and fear of recurrence were rated as important for all three target populations. Conclusion Subdomains that were considered important for the assessment of HRQoL in patients with cancer can be summarised into: physical symptoms, mobility & activity, future outlook, social roles & activities, family & relationships, social isolation, self-efficacy, overall HRQoL, and healthcare experience. The importance of the subdomains differed for patients in different phases of the cancer care continuum. These findings were used for the creation of the first version of the EUonQoL-Kit, as a base for its further development.https://doi.org/10.1186/s41687-025-00907-zQuality of lifeCancerDelphi studyPatient-reported outcome measuresPatient centred research |
| spellingShingle | Maike G. Sweegers Esther de Jongh Christopher Bedding Emma Nicklin Daniela Doege Sara Alfieri Laura Gangeri Bianca Scacciati Augusto Caraceni Cinzia Brunelli Anne Bredart Leslye Rojas-Concha Helle Pappot Giovanni Apolone Nanne Bos Gennaro Ciliberto Norbert Couespel Montse Ferrer Stein Kaasa Claudio Lombardo Ricardo Pietrobon Gabriella Pravettoni Aude Sirven Hugo Vachon Mogens Groenvold Maria Alice Franzoi Galina Velikova Alexandra Gilbert Lonneke V. van de Poll-Franse Development of a unified system for assessing health related quality of life across the cancer care continuum: the EUonQoL Delphi study to identify priorities for quality of life domains Journal of Patient-Reported Outcomes Quality of life Cancer Delphi study Patient-reported outcome measures Patient centred research |
| title | Development of a unified system for assessing health related quality of life across the cancer care continuum: the EUonQoL Delphi study to identify priorities for quality of life domains |
| title_full | Development of a unified system for assessing health related quality of life across the cancer care continuum: the EUonQoL Delphi study to identify priorities for quality of life domains |
| title_fullStr | Development of a unified system for assessing health related quality of life across the cancer care continuum: the EUonQoL Delphi study to identify priorities for quality of life domains |
| title_full_unstemmed | Development of a unified system for assessing health related quality of life across the cancer care continuum: the EUonQoL Delphi study to identify priorities for quality of life domains |
| title_short | Development of a unified system for assessing health related quality of life across the cancer care continuum: the EUonQoL Delphi study to identify priorities for quality of life domains |
| title_sort | development of a unified system for assessing health related quality of life across the cancer care continuum the euonqol delphi study to identify priorities for quality of life domains |
| topic | Quality of life Cancer Delphi study Patient-reported outcome measures Patient centred research |
| url | https://doi.org/10.1186/s41687-025-00907-z |
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