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

Objectives: 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.

Methods: 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.

Results: 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).

Conclusions: 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.