TY  - JOUR
AU  - Sweegers, Maike G
AU  - de Jongh, Esther
AU  - Bedding, Christopher
AU  - Nicklin, Emma
AU  - Doege, Daniela
AU  - Alfieri, Sara
AU  - Gangeri, Laura
AU  - Scacciati, Bianca
AU  - Caraceni, Augusto
AU  - Brunelli, Cinzia
AU  - Bredart, Anne
AU  - Rojas-Concha, Leslye
AU  - Pappot, Helle
AU  - Apolone, Giovanni
AU  - Bos, Nanne
AU  - Ciliberto, Gennaro
AU  - Couespel, Norbert
AU  - Ferrer, Montse
AU  - Kaasa, Stein
AU  - Lombardo, Claudio
AU  - Pietrobon, Ricardo
AU  - Pravettoni, Gabriella
AU  - Sirven, Aude
AU  - Vachon, Hugo
AU  - Groenvold, Mogens
AU  - Franzoi, Maria Alice
AU  - Velikova, Galina
AU  - Gilbert, Alexandra
AU  - van de Poll-Franse, Lonneke V
TI  - 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.
JO  - Journal of patient-reported outcomes
VL  - 9
IS  - 1
SN  - 2509-8020
CY  - London
PB  - SpringerOpen
M1  - DKFZ-2025-01259
SP  - 70
PY  - 2025
AB  - 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.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.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.Subdomains that were considered important for the assessment of HRQoL in patients with cancer can be summarised into: physical symptoms, mobility </td><td width="150">
AB  -  activity, future outlook, social roles </td><td width="150">
AB  -  activities, family </td><td width="150">
AB  -  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.
KW  - Humans
KW  - Quality of Life: psychology
KW  - Delphi Technique
KW  - Neoplasms: therapy
KW  - Neoplasms: psychology
KW  - Male
KW  - Female
KW  - Middle Aged
KW  - Europe
KW  - Adult
KW  - Continuity of Patient Care
KW  - Aged
KW  - Cancer Survivors: psychology
KW  - Surveys and Questionnaires
KW  - Patient Reported Outcome Measures
KW  - Palliative Care
KW  - Cancer (Other)
KW  - Delphi study (Other)
KW  - Patient centred research (Other)
KW  - Patient-reported outcome measures (Other)
KW  - Quality of life (Other)
LB  - PUB:(DE-HGF)16
C6  - pmid:40536596
C2  - pmc:PMC12179011
DO  - DOI:10.1186/s41687-025-00907-z
UR  - https://inrepo02.dkfz.de/record/302141
ER  -