The development of the European Toolkit for the self-assessment of quality of life across the cancer care continuum (EUonQoL-Kit).
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Nicklin Emma, Bedding Christopher, Alfieri Sara, Apolone Giovanni, Arndt Volker, Bos Nanne, Bredart Anne, Brunelli Cinzia, Caselli Luana, Ciliberto Gennaro, Rojas-Concha Leslye, Couespel Norbert, Doege Daniela, Ferrer Montse, Franzoi Maria Alice, Gangeri Laura, Garin Olatz, Gillanders Emma, Groenvold Mogens, Higgins Caitriona, de Jongh Esther C E, Kalmi Tapani, Kaasa Stein, Lombardo Claudio, Martin Elise, Pappot Helle, Pietrobon Ricardo, Pravettoni Gabriella, Scacciati Bianca, Sirven Aude, Sweegers Maike G, Thong Melissa S Y, Vachon Hugo, van de Poll-Franse Lonneke V, Vaz-Luis Ines, Caraceni Augusto, Velikova Galina, Gilbert Alexandra, EUonQOL consortium
Аннотация
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.
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.
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.