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

IF 2.1 3区医学 Q2 DENTISTRY, ORAL SURGERY & MEDICINE

Community dentistry and oral epidemiology Pub Date : 2025-10-03 DOI:10.1111/cdoe.70029

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

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引用次数: 0

Abstract

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.

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为患有罕见疾病的儿童和青少年绘制牙科保健地图：一项巴西多中心研究。

目的：描述巴西东南部米纳斯吉拉斯州患有罕见疾病（rd）的儿童和青少年专门中心提供的牙科保健情况。方法：回顾性横断面研究涉及年龄0-18岁，确诊为RD并在5个专业牙科中心接受治疗的个体。使用描述性和推断性统计分析诊断、首次牙科预约年龄、年度就诊频率和从家到治疗中心的旅行距离等数据。结果：共鉴定出244个不同rd的1057个个体。大多数是男孩（54.9%）。首次看牙医的平均年龄为8.52岁。血液病最为常见（38.9%）。平均旅行距离为99.1 km，其中Jequitinhonha地区的个体旅行距离最远（526.3 km）。平均每年看牙医2.4次。颅面综合征患者获得护理的时间较早（平均3.6年），随访次数较多（平均4.8次/年）。在首次就诊年龄方面存在显著的地区差异(p)。结论：患有rd的儿童和青少年开始牙科保健的时间较晚，随访率低，旅行负担大。专科中心集中在邦首府，这凸显了政策改革的必要性，以改善公平准入，特别是对偏远地区的患者。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Community dentistry and oral epidemiology 医学-公共卫生、环境卫生与职业卫生

CiteScore

4.40

自引率

8.70%

发文量

审稿时长

6 months

期刊介绍： The aim of Community Dentistry and Oral Epidemiology is to serve as a forum for scientifically based information in community dentistry, with the intention of continually expanding the knowledge base in the field. The scope is therefore broad, ranging from original studies in epidemiology, behavioral sciences related to dentistry, and health services research through to methodological reports in program planning, implementation and evaluation. Reports dealing with people of all age groups are welcome. The journal encourages manuscripts which present methodologically detailed scientific research findings from original data collection or analysis of existing databases. Preference is given to new findings. Confirmations of previous findings can be of value, but the journal seeks to avoid needless repetition. It also encourages thoughtful, provocative commentaries on subjects ranging from research methods to public policies. Purely descriptive reports are not encouraged, nor are behavioral science reports with only marginal application to dentistry. The journal is published bimonthly.