Journal Article

DKFZ-2026-00745

http://join2-wiki.gsi.de/foswiki/pub/Main/Artwork/join2_logo100x88.png The development of the European Toolkit for the self-assessment of quality of life across the cancer care continuum (EUonQoL-Kit).

Nicklin, E. ; Bedding, C. ; Alfieri, S. ; Apolone, G. ; Arndt, V.DKFZ* ; Bos, N. ; Bredart, A. ; Brunelli, C. ; Caselli, L. ; Ciliberto, G. ; Rojas-Concha, L. ; Couespel, N. ; Doege, D.DKFZ* ; Ferrer, M. ; Franzoi, M. A. ; Gangeri, L. ; Garin, O. ; Gillanders, E. ; Groenvold, M. ; Higgins, C. ; de Jongh, E. C. E. ; Kalmi, T. ; Kaasa, S. ; Lombardo, C. ; Martin, E. ; Pappot, H. ; Pietrobon, R. ; Pravettoni, G. ; Scacciati, B. ; Sirven, A. ; Sweegers, M. G. ; Thong, M. S. Y.DKFZ* ; Vachon, H. ; van de Poll-Franse, L. V. ; Vaz-Luis, I. ; Caraceni, A. ; Velikova, G. ; Gilbert, A. ; consortium, E. (Collaboration Author)

2026
Elsevier Amsterdam [u.a.]

Abstract: The European Oncology Quality of Life (EUonQoL) project aims to develop a questionnaire toolkit (EUonQoL-Kit) to assess the quality of life (QoL) of cancer patients and survivors across Europe.The EUonQoL-Kit development used mixed-methods and a co-design approach. Data was collected in six countries (Denmark, France, Germany, Italy, Netherlands and UK). The target populations were patients in active treatment (A), survivors (B) and patients requiring palliative care (C). A review of existing QoL theoretical models produced an initial EUonQoL conceptual framework. Semi-structured interviews and a Delphi survey evaluated/modified the framework. Existing validated items were used to construct the toolkit, including Computer Adaptive Testing (CAT), where available. A usability study evaluated EUonQoL-Kit.v1. Data triangulation and consensus methodology guided EUonQoL-Kit.v2.The initial conceptual framework covered four multi-dimensional domains: physical, social and overall health, and psychological wellbeing. The interviews and Delphi survey included 75 and 155 participants, respectively. The domain 'healthcare experience' was identified and included in the framework. EUonQoL-Kit.v1 resulted in three static questionnaires, one for each target population (n items- A=75; B=67; C=79). Following usability testing with 53 participants, EUonQoL-Kit.v2 was produced via a multi-stakeholder consensus development panel, creating a shortened version (n items- A=50; B=50; C=44). Dynamic versions of these questionnaires were developed using the EORTC CAT Core system.EUonQoL-Kit is a novel toolkit developed to assess QoL across the cancer continuum and inform health policy within Europe. Its psychometric properties are currently being evaluated using data collected on more than 4200 patients across 32 countries.

Keyword(s): Cancer Treatment ; Health-related quality of life ; Palliative Care ; Patient-reported outcomes (PRO) ; Questionnaire ; Survivorship

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Contributing Institute(s):

1. Cancer Survivorship (C071)

Research Program(s):

1. 313 - Krebsrisikofaktoren und Prävention (POF4-313) (POF4-313)

Appears in the scientific report 2026

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Database coverage:
; BIOSIS Previews ; Biological Abstracts ; Clarivate Analytics Master Journal List ; Current Contents - Clinical Medicine ; Current Contents - Life Sciences ; Ebsco Academic Search ; Essential Science Indicators ; IF >= 5 ; JCR ; Nationallizenz ; SCOPUS ; Science Citation Index Expanded ; Web of Science Core Collection

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