P.7.6 Needs of caregivers/families affected by Duchenne and Becker Muscular Dystrophy (DBMD): Data from the Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet)

Abstract

Systematically collected information regarding the needs of families of individuals with DBMD is not available. To develop a profile of needs of caregivers/families of individuals with DBMD. MD STARnet is a multistate collaboration that conducts population based surveillance for individuals with DBMD and interviews and surveys with their caregivers. A needs assessment survey of caregivers of individuals with DBMD was conducted between September 2008 and August 2012. The survey included questions about sociodemographic profile of respondents, clinical profile of the individual with DBMD, needs related to home and community, equipment, healthcare services, access to information, psychosocial needs of the individual with DBMD and psychosocial needs of caregiver/family.Two open ended questions asked about the 3 most important met and unmet needs. Response options were coded as needed/not needed and if needed, managed/not managed. Responses were received from 274 caregivers (70%) of those contacted.The majority of respondents were mothers, white, non-Hispanic, with at least some college education and annual income >$30,000 per year. The age of individuals with DBMD was 14.8±6.9years, 56% of them were non ambulatory and 29% required respiratory support. The majority of healthcare services and information related needs were reported as met. Conversely, psychosocial and financial needs were largely unmet, specifically, balancing work/family/caregiving, time and energy for relationships, funding for home and vehicle modifications. The survey results document a broad range of unmet needs in the areas of psychosocial support and financial resources These findings help identify gaps in care and services needed and will help guide development of interventions to facilitate optimal health outcomes and quality of life for individuals with DBMD and their families.