Evaluating the involvement of people with cancer and informal caregivers in the development process of a new set of quality of life questionnaires

Introduction: There is a general need for sharing practical examples of Patient and Public Involvement (PPI) within the research field to learn from and inspire. The aim of this article is to describe our process evaluation of PPI within the development process of the EUonQoL-Kit, a new set of quali...

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Autores: Engelaar, Merel, Ferrer Forés, Maria Montserrat, Rademakers, Jany
Tipo de recurso: artículo
Estado:Versión publicada
Fecha de publicación:2025
País:España
Institución:Universitat Pompeu Fabra
Repositorio:Repositorio Digital de la UPF
OAI Identifier:oai:dnet:rdupf_______::17379743875ae6df2dcee38e1b1aa9b2
Acceso en línea:https://hdl.handle.net/10230/73262
http://dx.doi.org/10.1111/hex.70267
Access Level:acceso abierto
Palabra clave:Europe
Co-researchers
Oncology
Patient and public involvement
Patient participation
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spelling Evaluating the involvement of people with cancer and informal caregivers in the development process of a new set of quality of life questionnairesEngelaar, MerelFerrer Forés, Maria MontserratRademakers, JanyEuropeCo-researchersOncologyPatient and public involvementPatient participationIntroduction: There is a general need for sharing practical examples of Patient and Public Involvement (PPI) within the research field to learn from and inspire. The aim of this article is to describe our process evaluation of PPI within the development process of the EUonQoL-Kit, a new set of quality of life questionnaires aimed at people with (past experience of) cancer. Methods: Five co-researchers (people with cancer and informal caregivers) were recruited and received training and support from a dedicated team of researchers. Involvement in the development process of the EUonQoL-Kit consisted of four major events: two workshops, a consensus meeting and a stakeholder forum. We have collected event documents, that is, meeting agendas, presentation slides, minutes of the events and minutes of meetings with co-researchers before and after the events, and qualitatively analysed these using the Cube Framework. Results: Our process evaluation showed that, over time, discussions evolved from focusing on the technical aspects of the EUonQoL-Kit to co-researchers' experiences as input for the questionnaires. Researchers' inexperience with PPI prompted the organisation of a training workshop. After this, researchers prepared the co-researchers better for the meetings and engaged them more actively by asking specific questions. All these developments contributed to a more active participation of co-researchers. Conclusion: PPI in the development process of the EUonQoL-Kit was a learning process. Factors that helped include allocating time and resources, actively creating space for co-researchers' input, providing support by researchers specifically responsible for the PPI activities and realising the importance of informal contact. Future PPI efforts should incorporate these principles from the start to facilitate successful collaboration between researchers and co-researchers. Patient or Public Contribution: People with cancer and informal caregivers played a significant role in this study. They were involved as co-researchers in all stages of the development process of the EUonQoL-Kit. In addition, they were involved in the qualitative analysis of the data presented in this article, the writing of the project report and the writing of this article as co-authors.The wider research project, 'Quality of Life in Oncology: Measuring What Matters for Cancer Patients and Survivors in Europe' (EUonQoL), in which these Patient and Public Involvement (PPI) activities are embedded, has received funding from the European Union's Research and Innovation Programme HORIZON-MISS-2021-CANCER-02 under Grant Agreement No. 101096362 Project EUonQoL.Wiley2026202620252026info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfapplication/pdfhttps://hdl.handle.net/10230/73262http://dx.doi.org/10.1111/hex.70267reponame:Repositorio Digital de la UPFinstname:Universitat Pompeu FabraInglésHealth Expectations. 2025 Jun;28(3):e70267info:eu-repo/grantAgreement/EC/HE/101096362© 2025 The Author(s). Health Expectations published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits use, distribution and reproduction in any medium, provided the original work is properly cited.http://creativecommons.org/licenses/by/4.0/info:eu-repo/semantics/openAccessoai:dnet:rdupf_______::17379743875ae6df2dcee38e1b1aa9b22026-06-12T07:21:37Z
dc.title.none.fl_str_mv Evaluating the involvement of people with cancer and informal caregivers in the development process of a new set of quality of life questionnaires
title Evaluating the involvement of people with cancer and informal caregivers in the development process of a new set of quality of life questionnaires
spellingShingle Evaluating the involvement of people with cancer and informal caregivers in the development process of a new set of quality of life questionnaires
Engelaar, Merel
Europe
Co-researchers
Oncology
Patient and public involvement
Patient participation
title_short Evaluating the involvement of people with cancer and informal caregivers in the development process of a new set of quality of life questionnaires
title_full Evaluating the involvement of people with cancer and informal caregivers in the development process of a new set of quality of life questionnaires
title_fullStr Evaluating the involvement of people with cancer and informal caregivers in the development process of a new set of quality of life questionnaires
title_full_unstemmed Evaluating the involvement of people with cancer and informal caregivers in the development process of a new set of quality of life questionnaires
title_sort Evaluating the involvement of people with cancer and informal caregivers in the development process of a new set of quality of life questionnaires
dc.creator.none.fl_str_mv Engelaar, Merel
Ferrer Forés, Maria Montserrat
Rademakers, Jany
author Engelaar, Merel
author_facet Engelaar, Merel
Ferrer Forés, Maria Montserrat
Rademakers, Jany
author_role author
author2 Ferrer Forés, Maria Montserrat
Rademakers, Jany
author2_role author
author
dc.subject.none.fl_str_mv Europe
Co-researchers
Oncology
Patient and public involvement
Patient participation
topic Europe
Co-researchers
Oncology
Patient and public involvement
Patient participation
description Introduction: There is a general need for sharing practical examples of Patient and Public Involvement (PPI) within the research field to learn from and inspire. The aim of this article is to describe our process evaluation of PPI within the development process of the EUonQoL-Kit, a new set of quality of life questionnaires aimed at people with (past experience of) cancer. Methods: Five co-researchers (people with cancer and informal caregivers) were recruited and received training and support from a dedicated team of researchers. Involvement in the development process of the EUonQoL-Kit consisted of four major events: two workshops, a consensus meeting and a stakeholder forum. We have collected event documents, that is, meeting agendas, presentation slides, minutes of the events and minutes of meetings with co-researchers before and after the events, and qualitatively analysed these using the Cube Framework. Results: Our process evaluation showed that, over time, discussions evolved from focusing on the technical aspects of the EUonQoL-Kit to co-researchers' experiences as input for the questionnaires. Researchers' inexperience with PPI prompted the organisation of a training workshop. After this, researchers prepared the co-researchers better for the meetings and engaged them more actively by asking specific questions. All these developments contributed to a more active participation of co-researchers. Conclusion: PPI in the development process of the EUonQoL-Kit was a learning process. Factors that helped include allocating time and resources, actively creating space for co-researchers' input, providing support by researchers specifically responsible for the PPI activities and realising the importance of informal contact. Future PPI efforts should incorporate these principles from the start to facilitate successful collaboration between researchers and co-researchers. Patient or Public Contribution: People with cancer and informal caregivers played a significant role in this study. They were involved as co-researchers in all stages of the development process of the EUonQoL-Kit. In addition, they were involved in the qualitative analysis of the data presented in this article, the writing of the project report and the writing of this article as co-authors.
publishDate 2025
dc.date.none.fl_str_mv 2025
2026
2026
2026
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv https://hdl.handle.net/10230/73262
http://dx.doi.org/10.1111/hex.70267
url https://hdl.handle.net/10230/73262
http://dx.doi.org/10.1111/hex.70267
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.relation.none.fl_str_mv Health Expectations. 2025 Jun;28(3):e70267
info:eu-repo/grantAgreement/EC/HE/101096362
dc.rights.none.fl_str_mv http://creativecommons.org/licenses/by/4.0/
info:eu-repo/semantics/openAccess
rights_invalid_str_mv http://creativecommons.org/licenses/by/4.0/
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
application/pdf
dc.publisher.none.fl_str_mv Wiley
publisher.none.fl_str_mv Wiley
dc.source.none.fl_str_mv reponame:Repositorio Digital de la UPF
instname:Universitat Pompeu Fabra
instname_str Universitat Pompeu Fabra
reponame_str Repositorio Digital de la UPF
collection Repositorio Digital de la UPF
repository.name.fl_str_mv
repository.mail.fl_str_mv
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