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)
| Autor: | Christopher Cunniff, K. Campbell, Jennifer Andrews, F.J. Meaney, Paul A. Romitti, Shree Pandya |
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| Rok vydání: | 2013 |
| Předmět: |
Occupational therapy
medicine.medical_specialty Social work business.industry Pulmonologist Speech Therapist Mental health Neurology Statistical significance Pediatrics Perinatology and Child Health Health care medicine Physical therapy Chi-square test Neurology (clinical) business Genetics (clinical) |
| Zdroj: | Neuromuscular Disorders. 23:775 |
| ISSN: | 0960-8966 |
| DOI: | 10.1016/j.nmd.2013.06.488 |
| Popis: | Anecdotal reports from families and care providers suggest a wide variation in services received by patients with DBMD. To document the type of health care services received by patients with DBMD. MD STARnet is a multistate collaboration that conducts population based surveillance for individuals with DBMD and interviews and surveys with their care givers. Telephone interviews were conducted between April 2007 and March 2012. In addition to demographic and clinical information, the interview included questions about the type of health care provider seen [primary care, neuromuscular, orthopedist, pulmonologist, cardiologist, physical therapist (PT), occupational therapist (OT), speech therapist (ST), and other] and type of services received (respiratory, dietary, mental health, social work, pastoral, pain management and case management) over the previous 12 months. Frequencies among states were compared with Chi square tests. Statistical significance was set at p Two hundred and ninety-six care givers (66%) of those contactable, completed the interview. Care givers (%) reported seeing these providers: primary care (88%), neuromuscular (87%), cardiologist (71%), pulmonologist (54%), orthopedist (33%), PT (69%), OT (42%), ST (20%), other (20%). Services received included case management (42%), respiratory (27%), social work (25%), dietary (22%), pastoral (16%), mental health (15%) and pain management (5%). There were significant differences among states in regards to the primary care, cardiac, pulmonary, orthopedic, physical and occupational therapy providers seen and dietary and case management services received. This study supports and provides a quantitative assessment relative to the anecdotal reports of variation in health care services received by patients with DBMD. Whether these differences affect outcomes needs to be determined. |
| Databáze: | OpenAIRE |
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