ReviewResearch involvement and engagement2024
Collaborating with cancer patients and informal caregivers in a European study on quality of life: protocol to embed patient and public involvement within the EUonQoL project.
Review in Research involvement and engagement, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
10 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Health-related quality of life domains relevant to people in Europe undergoing cancer treatment: a systematic review of qualitative research.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Pooled it
- Lived experience leadership in cancer research: a scoping review of conceptual definitions, roles, responsibilities, and impacts.Journal of cancer survivorship : research and practice · 2026Review
- What added value does Patient and Public Involvement (PPI) in oncology research bring to cancer patients and what are the challenges in realizing it? A mixed-methods cross-sectional study in four PPI groups in Flanders (Belgium).Research involvement and engagement · 2026Article
- Exploring health system factors related to the quality of life of people with (a history of) cancer: a rapid review.Health and quality of life outcomes · 2026Review
- Embedding Patient and Public Engagement in a Cancer Project: Protocol for a Qualitative Study.JMIR research protocols · 2026Article
- The transformative impact of spirituality assessment on the quality of life for end of life cancer patients: a perspective paper.Frontiers in psychology · 2026Article
- Patient and public involvement in secure mental health research: setting-specific considerations and a protocol for involvement in the CORAS study (COllaborative Risk ASsessment and management).Research involvement and engagement · 2025Review
- Article
- Development of a unified system for assessing health related quality of life across the cancer care continuum: the EUonQoL Delphi study to identify priorities for quality of life domains.Journal of patient-reported outcomes · 2025Article
- 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 : an international journal of public participation in health care and health policy · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
19 authors.
Funding
Abstract
backgroundPatient and public involvement (PPI) has become an essential part of health research. There is a need for genuine involvement in order to ensure that research is relevant to patients. This can then improve the quality, relevance, and impact of health research, while at the same time reducing wasted research and in doing so bringing science and society closer together. Despite the increasing attention for this involvement, it is not yet common practice to report on proposed activities. An article reporting planned PPI could provide guidance and inspiration for the wider academic community in future activities. Therefore, this current article aims to describe the way in which PPI principles are incorporated in the research project called "Quality of Life in Oncology: measuring what matters for cancer patients and survivors in Europe (EUonQoL)." This project aims to develop a new set of questionnaires to enable cancer patients to assess their quality of life, entitled the EUonQoL-Kit.
methodsThe first step is to recruit cancer patients and their informal caregivers as co-researchers in order to train them to collaborate with the researchers. Based on their skills and preferences, they are then assigned to several of the project's work packages. Their individual roles, tasks, and responsibilities regarding the work packages, to which they have been assigned, are evaluated and adapted when necessary. The impact of their involvement is evaluated by both the researchers and co-researchers. DISCUSSION: PPI is a complex and dynamic process. As such, the overall structure of the research may be defined while at the same time leaving room for certain aspects to be filled in later. Our research is, we believe, relevant as co-researcher involvement in such a large European project as EUonQoL is a new development.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.