P.7.7 Health care services received by patients with Duchenne/Becker muscular dystrophy (DBMD): Data from the Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet)

2013 ◽  
Vol 23 (9-10) ◽  
pp. 775
Author(s):  
S. Pandya ◽  
K. Campbell ◽  
J. Andrews ◽  
F.J. Meaney ◽  
C. Cunniff ◽  
...  
Keyword(s):  
Health Care ◽  
Muscular Dystrophy ◽  
Health Care Services ◽  
Becker Muscular Dystrophy ◽  
Research Network ◽  
Care Services

scholarly journals Palliative care services in families of males with muscular dystrophy: Data from MD STARnet

2019 ◽  
Vol 7 ◽  
pp. 205031211984051 ◽  
Author(s):  
Jennifer G Andrews ◽  
Shree Pandya ◽  
Christina Trout ◽  
Treeva Jaff ◽  
Dennis Matthews ◽  
...  
Keyword(s):  
Palliative Care ◽  
Muscular Dystrophy ◽  
Care Service ◽  
Palliative Care Service ◽  
Becker Muscular Dystrophy ◽  
Research Network ◽  
Services Utilization ◽  
Care Services ◽  
Frequency Of Use ◽  
Palliative Care Services

Introduction: Information on use of palliative care services among individuals with Duchenne and Becker muscular dystrophy is scant despite the clearly documented need. Methods: We examined associations between uptake of palliative care services by 233 males with Duchenne and Becker muscular dystrophy aged 12 and older for both caregiver and affected male characteristics using the Muscular Dystrophy Surveillance Tracking and Research Network baseline interview. Results: Ninety-one percent of caregivers (213/233) used at least one palliative care service. Case management had the highest frequency of use (59%). Use of palliative care was more frequently associated with the characteristics of affected males, as were some individual palliative care services. Utilization of six individual services differed among Muscular Dystrophy Surveillance Tracking and Research Network sites. While research suggests that pain is a frequent problem in Duchenne and Becker muscular dystrophy, only 12.5% reported use of pain management services. Discussion: Although palliative care use among families of males with Duchenne and Becker muscular dystrophy is high overall, there is much variability in use of individual services. Use of palliative care is driven by disease experience in the affected male. Many of the care recommendations for these individuals highlight the importance for early involvement of palliative care professionals.

Race and gender as factors in access to health insurance and utilization of health care services

2014 ◽  
Author(s):  
Susana J. Ferradas ◽  
G. Nicole Rider ◽  
Johanna D. Williams ◽  
Brittany J. Dancy ◽  
Lauren R. Mcghee
Keyword(s):  
Health Care ◽  
Health Insurance ◽  
Health Care Services ◽  
Race And Gender ◽  
Care Services ◽  
Access To Health ◽  
And Gender
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