Journal of epidemiology and population health · 2026
Exploring health-related quality of life with patients and survivors across the cancer care continuum - the EUonQoL-Kit mixed-method interview study.
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Brédart Anne, Martin Elise, Gillanders Emma, Bedding Christopher, Alfieri Sara, Apolone Giovanni, Arndt Volker, Bouleuc Carole, Brunelli Cinzia, Caraceni Augusto, Doege Daniela, Franzoi Maria Alice, Gangeri Laura, Higgins Caitriona, de Jongh Esther, Kalmi Tapani, Mino Jean-Christophe, Pappot Helle, Rojas-Concha Leslye, Scacciati Bianca, Sweegers Maike G, Thong Melissa S Y, van de Poll Lonneke, Vaz-Luis Ines, Velikova Galina, Gilbert Alexandra
Аннотация
OBJECTIVE: To improve health policy design in Europe, the EUonQoL-Kit for health-related quality of life (HRQoL) assessment was developed. We present the content generation of the EUonQoL-Kit with targeted participants in active treatment (A), survivorship (B), or in palliative care (C), from five European countries and the United Kingdom.
METHODS: Interviews started with an open-ended question to participants spontaneously describe their HRQoL, and followed by discussions on the importance of existing HRQoL framework domains/subdomains. Interviews were audio recorded, transcribed, anonymised and thematically analysed by each country's local researcher/language then translated verbatim into English for synthesis. A theme frequency of ≥ 60% was considered indicative of an essential HRQoL domain/subdomain. Analyses were performed on aggregated data from all countries.
RESULTS: Seventy-five interviews were conducted with participants varying in age, gender, stage of the cancer care continuum (A: 21%; B: 44%; C: 35%) and country between April-July 2023. Pain, symptom worries and treatment side effects; anxiety, depression and fear of recurrence; social roles, relationships and maintaining independence; and experiences of cancer care (e.g., satisfaction with communication, involvement in decision-making, cancer care interference with daily life) were reported as 'essential' in all three target groups. Other HRQoL subdomains (e.g., sexuality, spirituality) were regarded of mixed importance.
CONCLUSIONS: These interview results supported the overall content of HRQoL frameworks. 'Healthcare experience' was identified as being important to HRQoL and was added. With additional Delphi survey data, these results formed the basis of the EUonQoL-Kit v1 usability testing and revision, and a subsequent large European psychometric study.
METHODS: Interviews started with an open-ended question to participants spontaneously describe their HRQoL, and followed by discussions on the importance of existing HRQoL framework domains/subdomains. Interviews were audio recorded, transcribed, anonymised and thematically analysed by each country's local researcher/language then translated verbatim into English for synthesis. A theme frequency of ≥ 60% was considered indicative of an essential HRQoL domain/subdomain. Analyses were performed on aggregated data from all countries.
RESULTS: Seventy-five interviews were conducted with participants varying in age, gender, stage of the cancer care continuum (A: 21%; B: 44%; C: 35%) and country between April-July 2023. Pain, symptom worries and treatment side effects; anxiety, depression and fear of recurrence; social roles, relationships and maintaining independence; and experiences of cancer care (e.g., satisfaction with communication, involvement in decision-making, cancer care interference with daily life) were reported as 'essential' in all three target groups. Other HRQoL subdomains (e.g., sexuality, spirituality) were regarded of mixed importance.
CONCLUSIONS: These interview results supported the overall content of HRQoL frameworks. 'Healthcare experience' was identified as being important to HRQoL and was added. With additional Delphi survey data, these results formed the basis of the EUonQoL-Kit v1 usability testing and revision, and a subsequent large European psychometric study.