Multidisciplinary Support for Children With Genodermatoses in Brazil: A RE ‐ AIM Evaluation of Casa Santa Teresinha's Community‐Based Model

ABSTRACT Genodermatoses impose substantial psychosocial and functional burdens on affected children and their families, yet structured community‐based support models remain underrepresented in the literature. We describe Casa Santa Teresinha , a Brazilian non‐profit organization providing multidisciplinary care for children with genodermatoses and present a programmatic evaluation using the RE‐AIM framework (Reach, Effectiveness, Adoption, Implementation, and Maintenance). In 2025, the program engaged 103 patients and their families, delivering 4419 service encounters across psychology, social work, physiotherapy, genetic nursing, nutrition, and socioeducational activities. The model integrates individualized care planning, a genetic nurse acting as patient navigator, and innovative strategies to address social determinants of health, including rideshare‐based transportation as a clinical safety measure. Strong engagement and sustained participation highlight the program's relevance in a socioeconomically vulnerable population. While formal outcome measures are being implemented, this evaluation demonstrates a scalable, community‐based model that complements hospital care and may inform similar initiatives globally.

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Publication Details

Journal
Pediatric Dermatology
Published
2026-10-07
DOI
https://doi.org/10.1111/pde.70368
Primary Topic
Genetic and rare skin diseases.
Type
article
Field-Weighted Citation Impact
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article

Multidisciplinary Support for Children With Genodermatoses in Brazil: A RE ‐ AIM Evaluation of Casa Santa Teresinha's Community‐Based Model

Laís Lopes Almeida Gomes, Natália Campacci, Regia Patriota, Magda Maria Sales Carneiro-Sampaio et al.
Pediatric Dermatology
Genetic and rare skin diseases.
article

Multidisciplinary Support for Children With Genodermatoses in Brazil: A RE ‐ AIM Evaluation of Casa Santa Teresinha's Community‐Based Model

Laís Lopes Almeida Gomes, Natália Campacci, Regia Patriota, Magda Maria Sales Carneiro-Sampaio, Izadora Lapenda, Alreem Al‐Nabti, Luciana Paula Samorano, Zilda Najjar Prado de Oliveira
article en

Abstract

ABSTRACT Genodermatoses impose substantial psychosocial and functional burdens on affected children and their families, yet structured community‐based support models remain underrepresented in the literature. We describe Casa Santa Teresinha , a Brazilian non‐profit organization providing multidisciplinary care for children with genodermatoses and present a programmatic evaluation using the RE‐AIM framework (Reach, Effectiveness, Adoption, Implementation, and Maintenance). In 2025, the program engaged 103 patients and their families, delivering 4419 service encounters across psychology, social work, physiotherapy, genetic nursing, nutrition, and socioeducational activities. The model integrates individualized care planning, a genetic nurse acting as patient navigator, and innovative strategies to address social determinants of health, including rideshare‐based transportation as a clinical safety measure. Strong engagement and sustained participation highlight the program's relevance in a socioeconomically vulnerable population. While formal outcome measures are being implemented, this evaluation demonstrates a scalable, community‐based model that complements hospital care and may inform similar initiatives globally.

Pediatric Dermatology
Harvard University (US), Universidade de São Paulo (BR), Weill Cornell Medicine (US), University of Pennsylvania (US)
Openalex Percentile: Top 14%
Genetic and rare skin diseases.
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