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. 2025 Jun 19;9(1):70.
doi: 10.1186/s41687-025-00907-z.

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

Maike G Sweegers  1 , Esther de Jongh  2 , Christopher Bedding  3 , Emma Nicklin  3 , Daniela Doege  4 , Sara Alfieri  5 , Laura Gangeri  5 , Bianca Scacciati  5 , Augusto Caraceni  6 , Cinzia Brunelli  7 , Anne Bredart  8   9 , Leslye Rojas-Concha  10 , Helle Pappot  11 , Giovanni Apolone  12 , Nanne Bos  13 , Gennaro Ciliberto  14 , Norbert Couespel  15 , Montse Ferrer  16   17   18 , Stein Kaasa  19 , Claudio Lombardo  20 , Ricardo Pietrobon  21 , Gabriella Pravettoni  22 , Aude Sirven  23 , Hugo Vachon  24 , Mogens Groenvold  10   25 , Maria Alice Franzoi  26 , Galina Velikova  3 , Alexandra Gilbert  3 , Lonneke V van de Poll-Franse  2   27
Affiliations

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

Maike G Sweegers et al. J Patient Rep Outcomes. .

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.

Keywords: Cancer; Delphi study; Patient centred research; Patient-reported outcome measures; Quality of life.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: Participating study centers obtained ethical approval from their respective Ethics Committee. Participants provided either electronic or written informed consent. Consent for publication: Not applicable. Competing interests: Maria Alice Franzoi: Research funding Resilience Care (institution), Gilead Sciences (Institution), speaker honoraria novartis (institution).

References

    1. Nayak MG et al (2017) Quality of life among Cancer patients. Indian J Palliat Care 23(4):445–450 - PMC - PubMed
    1. Lewandowska A et al (2020) Quality of life of Cancer patients treated with chemotherapy. Int J Environ Res Public Health, 17(19) - PMC - PubMed
    1. Division of Mental Health and Prevention of Substance Abuse (1998) Programme on mental Health, in WHOQOL user manual. World Health Organization, Editor
    1. Aaronson NK et al (1993) The european organization for research and treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 85(5):365–376 - PubMed
    1. Cella DF et al (2023) The functional assessment of Cancer therapy scale: development and validation of the general measure. J Clin Oncol 41(35):5335–5344 - PubMed

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