Work

Co-creation of web-based informational content for support network members of childhood, adolescent and young adult cancer survivors: A mixed-methods study protocol of the e-QuoL content creation project

Year: 2026

Type: article

Abstract: Introduction Support network members of childhood, adolescent, and young adult cancer survivors (CAYACS)—including relatives and other close individuals—report substantial unmet information and support needs. Yet, no central, tailored resource is currently available in Europe. This project, part of the European e-QuoL (e-health tools to promote Equality in Quality of Life) initiative, aims to develop multilingual, evidence-based, online informational content for support network members to promote their long-term well-being. This paper describes the co-creation methods used to develop this informational content. Methods We followed a four-phase co-creation process (2024–2027). Phase 1 identified key topics through systematic reviews and the European e-QuoL Needs Study. Phase 2 involved drafting informational content by experts in pediatric oncology, psychosocial care, and survivorship, written in accessible language (Hemingway grade ≤ 9), followed by focus groups and interviews with support network members to evaluate its relevance, clarity, completeness, and helpfulness. Eligible participants were aged ≥16 years, English-speaking, and living in Europe. Phase 3 consisted of a Delphi study with experts and support network members to iteratively refine the content until ≥75% consensus was reached. Phase 4 involves translation, country-specific adaptation, and dissemination through the PanCare website. Results Support network members reported needs spanning multiple domains, including cancer-related health information, psycho-emotional support, follow-up care, finances, education, and sexuality. In total, 13 support network members participated in focus groups and interviews, and 52 experts and support network members participated in the Delphi study, in which consensus was reached in two rounds. Discussion This project provides a central, multilingual, evidence-based online information resource for support network members of CAYACS. The co-creation approach enhances information quality and user relevance, while broad dissemination via the PanCare website, in multiple languages, promotes accessibility. Beyond its practical outcomes, the study contributes to scientific knowledge on co-creation and user-centered design in survivorship research.

Source: Open Research Europe

DOI: 10.12688/openreseurope.24667.1