Palliative Care for Duchenne Muscular Dystrophy

January 31, 2004

Principle Investigator: F. John Meaney, PhD
Institution: University of Arizona
Approximate Year 1 Funding: $74,932.50
RTOI #: 2004-03-03

This proposal is an extension to an ongoing, population-based surveillance study to identify children with Duchenne and Becker Muscular Dystrophy (DBMD).

The Muscular Dystrophy Surveillance Tracking and Research Network (MDSTARNet) is a multi-site project funded by Centers for Disease Control and Prevention (CDC) and comprises projects in four states: Arizona, Colorado, Iowa, and New York. The data from MDSTARNet will be used to:

  1. Determine the prevalence of DBMD and determine trends in prevalence
  2. Describe the source, frequency, and type of prevention and medical care among individuals with DBMD
  3. Determine the prevalence of related complications
  4. Search for possible associations between health outcomes and the source, frequency and type of preventive care

The MDSTARNet team is in the process of completing abstractions of medical records and will collect additional information from parent interviews. We propose to add a series of questions about palliative and hospice care to survey instruments under development for the MDSTARNet parent interviews.

This study offers an unusual opportunity to assess the availability and use of palliative and hospice care in these states and to identify barriers and predictors of their use from among psychosocial and parent characteristics, cultural factors, and socioeconomic indicators. Hierarchical linear models will be employed to estimate the impact of these variables on the use of palliative and hospice care.