Anne Brédart, Elise Martin, Emma Gillanders, Christopher Bedding, Sara Alfieri, Giovanni Apolone, Volker Arndt, Carole Bouleuc, Cinzia Brunelli, Augusto Caraceni, Daniela Doege, Maria Alice Franzoi, Laura Gangeri, Caitriona Higgins, Esther de Jongh, Tapani Kalmi, Jean-Christophe Mino, Helle Pappot, Leslye Rojas-Concha, Bianca Scacciati, Maike G Sweegers, Melissa S Y Thong, Lonneke van de Poll, Ines Vaz-Luis, Galina Velikova, Alexandra Gilbert
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.
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.