04244 Mental health in the porphyrias
This study investigates the mental health challenges across the Porphyrias through focus group discussions.The primary aim was to identify emotional and psychological issues, coping strategies, and support needs.Both groups reported significant mental health struggles.Recommendations include enhanced mental health support, mentorship programs, and communitybuilding initiatives to improve the quality of life for those affected by porphyria.Methods Focus groups were conducted for individuals with Cutaneous Porphyria on May 13, 2024, and Acute Hepatic Porphyria on June 13, 2024.Discussions covered mental health struggles, coping strategies, and the impact of the disease on daily life.The sessions were transcribed and analyzed to identify recurring themes and key takeaways.
Authors
- Kristen Wheeden (ORCID: https://orcid.org/0009-0006-7583-1441)
- Liz Allan
Institutions
- Institut national de recherche en sciences et technologies du numérique (FR)
Publication Details
- Published
- 2024-09-01
- DOI
- https://doi.org/10.1136/bmjgast-2024-icpp.31
- Primary Topic
- Porphyrin Metabolism and Disorders
- Type
- article
- Field-Weighted Citation Impact
- 0.00