Australian children living with rare diseases: health service use and barriers to accessing care.

ABSTRACT:

Background

Children with rare diseases experience challenges at home and school and frequently require multi-disciplinary healthcare. We aimed to determine health service utilization by Australian children with rare diseases and barriers to accessing healthcare.

Methods

Parents completed an online survey on health professional and emergency department (ED) presentations, hospitalization, and barriers to accessing services. Potential barriers to service access included residential location (city, regional, remote) and child health-related functioning, determined using a validated, parent-completed measure-of-function tool.

Results

Parents of 462 children with over 240 rare diseases completed the survey. Compared with the general population, these children were more lik

SUBMITTER: Teutsch S 

PROVIDER: S-EPMC9848027 | biostudies-literature | 2023 Jul

REPOSITORIES: biostudies-literature