Journal of evaluation in clinical practice · 2026
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).
СтатьяНазвание и аннотация: Перевод в очереди
Обработка статьи · этапы, ошибки и управление
Загрузка состояния…
Ошибки и ограничения
История · было → стало
Состояние обновляется каждые 5 секунд, пока блок открыт. Процент показывается только там, где известен объём работы. Пауза останавливает продолжение этапа; текущий запрос к источнику может завершиться.
Martínez-Ripoll Juan Manuel, García-Domingo Marta, De la Fuente Robles Yolanda M
Аннотация
BACKGROUND AND AIMS: Epidermolysis 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.
METHODS: A 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.
RESULTS: The 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.
CONCLUSIONS: This 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.
METHODS: A 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.
RESULTS: The 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.
CONCLUSIONS: This 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.