Development of a World Health Organization international survey assessing the lived experience of people affected by cancer: outcomes from pilot testing, user feedback, and survey revision
Participant feedback informed important changes to the survey design and content. Our findings highlight that engaging with people with lived experience is a critical first step to develop such a global survey, optimise participation, and amplify individuals' voices.
Authors
- Julie Cayrol (ORCID: https://orcid.org/0000-0001-5211-1165)
- Ruth Hoffman
- Claire Elizabeth Wakefield (ORCID: https://orcid.org/0000-0001-7704-7067)
- Clarissa E. Schilstra (ORCID: https://orcid.org/0000-0002-4896-6037)
- Mark W. Donoghoe (ORCID: https://orcid.org/0000-0003-0212-6443)
- Jordana K. McLoone (ORCID: https://orcid.org/0000-0002-2604-9975)
- Roberta Ortiz (ORCID: https://orcid.org/0000-0002-8287-0928)
- André Ilbawi (ORCID: https://orcid.org/0000-0002-4751-6595)
- Lori Wiener (ORCID: https://orcid.org/0000-0002-9573-8870)
- Moses Echodu
Institutions
- The University of Melbourne (AU)
- American Childhood Cancer Organization (US)
- World Health Organization (CH)
- Uganda Cancer Institute (UG)
- National Cancer Institute (US)
- Neuroscience Research Australia (AU)
Publication Details
- Journal
- Supportive Care in Cancer
- Published
- 2025-05-01
- DOI
- https://doi.org/10.1007/s00520-025-09372-2
- Primary Topic
- Patient-Provider Communication in Healthcare
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- University of New South Wales
- Medical Research Council
- National Health and Medical Research Council