Needs management in families affected by childhood-onset dystrophinopathies.

ABSTRACT:

Purpose

To collect information about the needs of families affected by childhood-onset dystrophinopathies residing in the United States.

Methods

Individuals with an eligible dystrophinopathy were identified by the Muscular Dystrophy Surveillance, Tracking, and Research network. Between September 2008 and December 2012, 272 caregivers completed a 48-item survey about needs related to information, healthcare services, psychosocial issues, finances, caregiver demographics, and the individual's functioning.

Results

Overall, at least 80% of the survey items were identified as needs for more than one-half of caregivers. Among the needs identified, physical health and access to information were currently managed for most caregivers. Items identified as needed but managed les

SUBMITTER: Conway KM 

PROVIDER: S-EPMC6399767 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature