ArticleJournal of evaluation in clinical practice2026
Interdisciplinary Approach in Pediatric Patients With Recessive Dystrophic Epidermolysis Bullosa: Experience From the Dermatology Service and the Palliative Care and Complex Chronic Patient Team at Sant Joan de Déu Hospital (Barcelona, Spain).
Article in Journal of evaluation in clinical practice, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed.
- Psychocutaneous Disorders in Pediatric and Adolescent Populations: A Narrative Review.American journal of clinical dermatology · 2026Review
- Interdisciplinary Approach in Pediatric Patients With Recessive Dystrophic Epidermolysis Bullosa: Experience From the Dermatology Service and the Palliative Care and Complex Chronic Patient Team at Sant Joan de Déu Hospital (Barcelona, Spain).Journal of evaluation in clinical practice · 2026Article
- Impact of modified SSD soft brace on surgical outcomes and wound healing duration following hand scar contracture release in RDEB patients.Frontiers in surgery · 2026Article
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
BACKGROUND AND
aimsEpidermolysis bullosa is a rare genetic disorder causing extreme mucocutaneous fragility, requiring specialized, multidisciplinary care. Integrating palliative care into Epidermolysis bullosa management has proven beneficial in symptom control and psychosocial support. The aim of this study was to analyze the interdisciplinary intervention of the Dermatology Service and the Palliative Care and Complex Chronic Patient Team at Sant Joan de Déu Hospital in pediatric patients with Recessive Dystrophic Epidermolysis Bullosa.
methodsA descriptive qualitative design was used to explore the experiences of parents of children with Recessive Dystrophic Epidermolysis Bullosa and healthcare professionals at Sant Joan de Déu Hospital. Internal protocols were analyzed and open online surveys were conducted. Families were recruited through purposive sampling with DEBRA España's support, while healthcare professionals were invited from the Dermatology Service and the Palliative Care and Complex Chronic Patient Team.
resultsThe joint interdisciplinary intervention between the Dermatology Service and the Palliative Care and Complex Chronic Patient Team at SJDH, grounded in a palliative care approach, provides holistic and continuous support to patients and their families from birth throughout the entire life course. It incorporates spiritual care and community coordination, fosters autonomy and social inclusion, and aligns with international best practices established by specialized centers such as EB House Austria. This model stands as a replicable benchmark for the care of individuals with EB.
conclusionsThis qualitative study suggests that an interdisciplinary care model, grounded in palliative care and implemented from an early stage in a sustained manner, improves the quality of life of pediatric patients with RDEB and their families. The coordination between clinical and psychosocial teams, together with person-centered care, enhances family autonomy, promotes inclusion and addresses the comprehensive needs across the life course.
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