Evaluating the Involvement of People With Cancer and Informal Caregivers in the Development Process of a New Set of Quality of Life Questionnaires
ABSTRACT 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...
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2025-06-01
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| Online Access: | https://doi.org/10.1111/hex.70267 |
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| author | Merel Engelaar Femke vanSchelven Nanne Bos Marion L'Hote Clémentine Rialland Norbert Couespel Carina Dantas Caitriona Higgins Tapani Kalmi Inke Minnée‐van Braak Laura Pinnavaia Giovanni Apolone Cinzia Brunelli Augusto Caraceni Montse Ferrer Mogens Groenvold Stein Kaasa Gennaro Ciliberto Claudio Lombardo Ricardo Pietrobon Gabriella Pravettoni Aude Sirven Hugo Vachon Galina Velikova Jany Rademakers |
| author_facet | Merel Engelaar Femke vanSchelven Nanne Bos Marion L'Hote Clémentine Rialland Norbert Couespel Carina Dantas Caitriona Higgins Tapani Kalmi Inke Minnée‐van Braak Laura Pinnavaia Giovanni Apolone Cinzia Brunelli Augusto Caraceni Montse Ferrer Mogens Groenvold Stein Kaasa Gennaro Ciliberto Claudio Lombardo Ricardo Pietrobon Gabriella Pravettoni Aude Sirven Hugo Vachon Galina Velikova Jany Rademakers |
| author_sort | Merel Engelaar |
| collection | DOAJ |
| description | ABSTRACT 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. |
| format | Article |
| id | doaj-art-a9526d2ac2f84f86af1fa5dc4f00b3cc |
| institution | Matheson Library |
| issn | 1369-6513 1369-7625 |
| language | English |
| publishDate | 2025-06-01 |
| publisher | Wiley |
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| series | Health Expectations |
| spelling | doaj-art-a9526d2ac2f84f86af1fa5dc4f00b3cc2025-06-27T05:43:05ZengWileyHealth Expectations1369-65131369-76252025-06-01283n/an/a10.1111/hex.70267Evaluating the Involvement of People With Cancer and Informal Caregivers in the Development Process of a New Set of Quality of Life QuestionnairesMerel Engelaar0Femke vanSchelven1Nanne Bos2Marion L'Hote3Clémentine Rialland4Norbert Couespel5Carina Dantas6Caitriona Higgins7Tapani Kalmi8Inke Minnée‐van Braak9Laura Pinnavaia10Giovanni Apolone11Cinzia Brunelli12Augusto Caraceni13Montse Ferrer14Mogens Groenvold15Stein Kaasa16Gennaro Ciliberto17Claudio Lombardo18Ricardo Pietrobon19Gabriella Pravettoni20Aude Sirven21Hugo Vachon22Galina Velikova23Jany Rademakers24Netherlands Institute for Health Services Research (Nivel) Utrecht the NetherlandsNetherlands Institute for Health Services Research (Nivel) Utrecht the NetherlandsNetherlands Institute for Health Services Research (Nivel) Utrecht the NetherlandsEuropean Cancer Organisation Brussels BelgiumEuropean Cancer Organisation Brussels BelgiumEuropean Cancer Organisation Brussels BelgiumSHINE 2Europe Lda Coimbra PortugalBeaumont RCSI Cancer Centre Dublin IrelandIndependent co‐researcher Turku FinlandIndependent co‐researcher The Hague the NetherlandsDepartment of Languages, Literatures, Cultures and Mediations University of Milan Milan ItalyScientific Directorate Fondazione IRCCS Istituto Nazionale dei Tumori Milan ItalyPalliative Care, Pain Therapy and Rehabilitation Unit Fondazione IRCCS Istituto Nazionale dei Tumori Milan ItalyDepartment of Clinical Sciences and Community Health, Department of Excellence 2023‐2027 University of Milan Milan ItalyHospital del Mar Research Institute Barcelona SpainBispebjerg/Frederiksberg Hospital and University of Copenhagen Copenhagen DenmarkOslo Universitetssykehus HF Oslo NorwayIRCCS National Cancer Institute Regina Elena Rome ItalyOrganisation of European Cancer Institutes Brussels BelgiumSporeData OÜ Tallinn EstoniaApplied Research Division for Cognitive and Psychological Science European Institute of Oncology IRCCS Milan ItalyUnicancer Paris FranceQuality of Life Department European Organisation for Research and Treatment of Cancer Brussels BelgiumLeeds Institute of Medical Research at St James's University of Leeds Leeds UKNetherlands Institute for Health Services Research (Nivel) Utrecht the NetherlandsABSTRACT 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.https://doi.org/10.1111/hex.70267co‐researchersEuropeoncologypatient and public involvementpatient participation |
| spellingShingle | Merel Engelaar Femke vanSchelven Nanne Bos Marion L'Hote Clémentine Rialland Norbert Couespel Carina Dantas Caitriona Higgins Tapani Kalmi Inke Minnée‐van Braak Laura Pinnavaia Giovanni Apolone Cinzia Brunelli Augusto Caraceni Montse Ferrer Mogens Groenvold Stein Kaasa Gennaro Ciliberto Claudio Lombardo Ricardo Pietrobon Gabriella Pravettoni Aude Sirven Hugo Vachon Galina Velikova Jany Rademakers Evaluating the Involvement of People With Cancer and Informal Caregivers in the Development Process of a New Set of Quality of Life Questionnaires Health Expectations co‐researchers Europe oncology patient and public involvement patient participation |
| title | 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_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_sort | evaluating the involvement of people with cancer and informal caregivers in the development process of a new set of quality of life questionnaires |
| topic | co‐researchers Europe oncology patient and public involvement patient participation |
| url | https://doi.org/10.1111/hex.70267 |
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