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 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.