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The development of the European Toolkit for the self-assessment of quality of life across the cancer care continuum (EUonQoL-Kit).

Emma Nicklin ,
Christopher Bedding ,
Sara Alfieri ,
Giovanni Apolone ,
Volker Arndt ,
Nanne Bos ,
Anne Bredart ,
Cinzia Brunelli ,
Luana Caselli ,
Gennaro Ciliberto ,
Leslye Rojas-Concha ,
Norbert Couespel ,
Daniela Doege ,
Montse Ferrer ,
Maria Alice Franzoi ,
Laura Gangeri ,
Olatz Garin ,
Emma Gillanders ,
Mogens Groenvold ,
Caitriona Higgins ,
Esther C E de Jongh ,
Tapani Kalmi ,
Stein Kaasa ,
Claudio Lombardo ,
Elise Martin ,
Helle Pappot ,
Ricardo Pietrobon ,
Gabriella Pravettoni ,
Bianca Scacciati ,
Aude Sirven ,
Maike G Sweegers ,
Melissa S Y Thong ,
Hugo Vachon ,
Lonneke V van de Poll-Franse ,
Ines Vaz-Luis ,
Augusto Caraceni ,
Galina Velikova ,
Alexandra Gilbert ,

Abstract

METHODS

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.

CONCLUSIONS

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.

RESULTS

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.

PURPOSE

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.

More about this publication

European journal of cancer (Oxford, England : 1990)

Volume 238
Pages 116677
Publication date 02-05-2026

Full text links

Publisher website (DOI) 10.1016/j.ejca.2026.116677
Europe PubMed Central 41855780
Pubmed 41855780

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