A matrix tool to foster patient engagement in children, adolescents and young adults: report from a multistakeholder workshop
This study presents the initial steps towards developing a matrix tool to enhance paediatric patient engagement in drug development. The multistakeholder approach provided valuable insights into the matrix tool's structure and content. While further validation and refinement are needed, particularly regarding practical implementation and global applicability, this initiative lays the groundwork for more effective and inclusive paediatric drug development processes. Future research should focus on validating the matrix tool across different age groups and disease contexts, incorporating real life experiences, and addressing cultural and linguistic considerations.
Authors
- Cécile Ollivier (ORCID: https://orcid.org/0000-0002-7315-1104)
- Evelien Snauwaert (ORCID: https://orcid.org/0000-0003-2660-7460)
- Roberto De Lisa (ORCID: https://orcid.org/0009-0007-0291-952X)
- Ann Raes (ORCID: https://orcid.org/0000-0001-7809-2505)
- Jeff Schmidt
- Martine Dehlinger-Kremer
- Elin Haf Davies (ORCID: https://orcid.org/0000-0002-4987-0088)
- Fenna Mahler (ORCID: https://orcid.org/0000-0001-6851-5455)
- Donato Bonifazi (ORCID: https://orcid.org/0000-0003-2636-9159)
- Abby P. Clark
- Ann De Guchtenaere (ORCID: https://orcid.org/0000-0002-2723-1437)
- Karel Allegaert
- Maria Cavaller-Bellaubi (ORCID: https://orcid.org/0000-0002-6658-6863)
- Gunter F. Egger
- Pat Furlong
- Leanne L. West (ORCID: https://orcid.org/0000-0002-8079-7077)
- Jennifer Preston (ORCID: https://orcid.org/0000-0003-4800-234X)
- Lieve Nuytinck (ORCID: https://orcid.org/0000-0002-5165-6937)
- Joana Claverol (ORCID: https://orcid.org/0000-0003-4209-1142)
- Llewelyn Yi Chang Tan (ORCID: https://orcid.org/0000-0003-0924-6632)
- Ruth De Bruyne (ORCID: https://orcid.org/0000-0002-5623-3300)
- Anneliene Hechtelt Jonker (ORCID: https://orcid.org/0000-0001-5883-7610)
- Johan Vande Walle (ORCID: https://orcid.org/0000-0001-9700-5358)
- Karsten Vanden Wyngaert (ORCID: https://orcid.org/0000-0001-6063-9971)
- Arianna Bertolani (ORCID: https://orcid.org/0000-0003-1793-294X)
- Francis P. Crawley (ORCID: https://orcid.org/0000-0002-6893-5916)
- Elke Gasthuys (ORCID: https://orcid.org/0000-0002-0503-3560)
- Eva Degraeuwe (ORCID: https://orcid.org/0000-0003-2523-3022)
- Pirkko Lepola (ORCID: https://orcid.org/0000-0001-9663-0872)
- Katya De Groote (ORCID: https://orcid.org/0000-0001-8278-2437)
- Agnieszka Prytula-Ebels (ORCID: https://orcid.org/0000-0001-9551-8758)
- Solange Corriol‐Rohou (ORCID: https://orcid.org/0000-0002-5227-2724)
- Maria Mavris
- Elizabeth Vroom (ORCID: https://orcid.org/0000-0001-6313-9243)
- Joseph Scheeren
- Marieke van Meel
- M. Turner (ORCID: https://orcid.org/0000-0002-5299-8656)
- E. López (ORCID: https://orcid.org/0000-0002-6751-0211)
- A. Natale
- Begoña Nafria
- Elisa Ferrer
- Margriet Eygenraam
- Stephanie Breitenstein
- Sabina Schmidt-Goldstein
- Frank Tenningkeit
- Aline Vlaeminck
- Katia Boven
Institutions
- Ghent University Hospital (BE)
- Ghent University (BE)
Publication Details
- Journal
- Research Involvement and Engagement
- Published
- 2024-11-27
- DOI
- https://doi.org/10.1186/s40900-024-00658-z
- Primary Topic
- Adolescent and Pediatric Healthcare
- Type
- article
- Field-Weighted Citation Impact
- 0.00