# Mapping Dental Care for Children and Adolescents With Rare Diseases: A Brazilian Multicentre Study

**Authors:** Heloisa Vieira Prado, Rayssa Maria Soalheiro de Souza, Gabriella Guerra Freire Gabrich Fonseca, Kamila Rodrigues Junqueira Carvalho, Anna Vitória Mendes Viana Silva, Iasmin Fonseca Tolentino Mascarenhas, Beatriz Rezende Bergo, Hanna Larissa Barbosa Soares, Bárbara Mendes de Jesus, Layanne Ribeiro Ferreira e Sobral, Kélisson Duarte Reis, Késia Lara dos Santos Marques, Fabiana Sodré de Oliveira, Daniella Reis Barbosa Martelli, José Alcides Almeida de Arruda, Benjamin P. J. Fournier, Denise Vieira Travassos, Soraia Macari, Célia Regina Moreira Lanza, Ana Cristina Borges‐Oliveira, Hercílio Martelli‐Júnior, Tarcília Aparecida Silva

PMC · DOI: 10.1111/cdoe.70029 · Community Dentistry and Oral Epidemiology · 2025-10-03

## TL;DR

This study maps dental care for children with rare diseases in Brazil, revealing delays in care and regional disparities.

## Contribution

A novel multicenter study in Brazil describing dental care patterns for children with rare diseases.

## Key findings

- Children with rare diseases had an average age of 8.52 years for their first dental appointment.
- Patients with craniofacial syndromes accessed dental care earlier and had more frequent visits.
- Significant regional disparities were found in access to dental care and travel distances.

## Abstract

To describe the landscape of dental care provided by specialised centres for children and adolescents with rare diseases (RDs) in the state of Minas Gerais, southeastern Brazil.

A retrospective cross‐sectional study was conducted involving individuals aged 0–18 years with a confirmed diagnosis of a RD who received care at five specialised dental centres. Data on the diagnosis, age at first dental appointment, frequency of annual visits and travel distance from home to treatment centre were analysed using descriptive and inferential statistics.

A total of 1057 individuals with 244 different RDs were identified. Most were boys (54.9%). The average age at the first dental appointment was 8.52 years. Haematological diseases were the most prevalent (38.9%). The average travel distance for treatment was 99.1 km, with individuals from the Jequitinhonha region traveling the farthest (526.3 km). The average number of annual dental visits was 2.4. Patients with craniofacial syndromes accessed care earlier (average: 3.6 years) and had more frequent follow‐up appointments (average: 4.8 visits/year). Significant regional disparities were found in age at first appointment (p < 0.001), travel distance (p < 0.001) and frequency of visits (p = 0.002).

Children and adolescents with RDs had delayed initiation of dental care, low follow‐up rates and substantial travel burdens. The concentration of specialised centres in the state capital underscores the need for policy reforms to improve equitable access, particularly for patients in remote areas.

## Linked entities

- **Diseases:** rare diseases (MONDO:0021200)

## Full-text entities

- **Diseases:** Haematological diseases (MESH:D004194), RDs (MESH:D035583), craniofacial syndromes (MESH:C565118), RD (MESH:D000077733)
- **Species:** Homo sapiens (human, species) [taxon 9606]

## Full text

_Full body text omitted from this summary view._ Fetch the complete paper as Markdown: https://tomesphere.com/paper/PMC13001003/full.md

## Figures

1 figure with captions in the complete paper: https://tomesphere.com/paper/PMC13001003/full.md

## References

40 references — full list in the complete paper: https://tomesphere.com/paper/PMC13001003/full.md

---
Source: https://tomesphere.com/paper/PMC13001003