Background Duchenne muscular dystrophy (DMD) is a genetic neuromuscular disorder resulting in pro... more Background Duchenne muscular dystrophy (DMD) is a genetic neuromuscular disorder resulting in progressive muscle weakness and loss of skills, orthopedic abnormalities, and cardiac and respiratory insufficiencies. With improved medical interventions and intensive health supports, individuals with DMD now live into their third decade, but disease progression is variable and difficult to predict. 1-3 As a result, there is an increasing need for palliative care services that are today viewed as complementary to medical interventions. 3-5 The current definitions of palliative care address much more than end-of-life care and include the early stages of a condition. 4-7 Services typically considered as palliative include respiratory care to improve functioning and maintain quality of life, case management, counseling about decision-making as the disease progresses, legal planning like advanced directives, and other supportive services, all of which are critical in DMD. 3,5,8-10 Despite the documented importance of palliative care overall, there has been some debate about its role in the care of individuals with neuromuscular disorders. 11
Background-Individuals with congenital heart defects (CHDs) are recommended to receive all inpati... more Background-Individuals with congenital heart defects (CHDs) are recommended to receive all inpatient cardiac and noncardiac care at facilities that can offer specialized care. We describe geographic accessibility to such centers in New York State and determine several factors associated with receiving care there. Methods-We used inpatient hospitalization data from the Statewide Planning and Research Cooperative System (SPARCS) in New York State 2008-2013. In the absence of specific adult CHD care center designations during our study period, we identified pediatric/adult and adult-only cardiac surgery centers through the Cardiac Surgery Reporting System to estimate age-based specialized care. We calculated one-way drive and public transit time (in minutes) from residential address to centers using R gmapsdistance package and the Google Maps Distance Application Programming Interface (API). We calculated prevalence ratios using modified Poisson regression
Introduction: Palliative care services that address physical pain and emotional, psychosocial, an... more Introduction: Palliative care services that address physical pain and emotional, psychosocial, and spiritual needs may benefit individuals with Duchenne muscular dystrophy (DMD). Methods: The objective of this study was to describe the palliative care services that families of males with DMD report they receive. A questionnaire was administered to families of males with DMD born prior to January 1, 1982. Thirtyfour families responded. Results: Most families (85%) had never heard the term palliative care. Only attendant care and skilled nursing services showed much usage, with 44% and 50% indicating receipt of these services, respectively. Receipt of other services was reported less frequently: pastoral care (27%); respite care (18%); pain management (12%); and hospice care (6%). Only 8 respondents (25%) reported having any type of directive document in place. Conclusion: The data suggest a need for improved awareness of palliative care and related services among families of young men with DMD.
Background Duchenne muscular dystrophy (DMD) is a genetic neuromuscular disorder resulting in pro... more Background Duchenne muscular dystrophy (DMD) is a genetic neuromuscular disorder resulting in progressive muscle weakness and loss of skills, orthopedic abnormalities, and cardiac and respiratory insufficiencies. With improved medical interventions and intensive health supports, individuals with DMD now live into their third decade, but disease progression is variable and difficult to predict. 1-3 As a result, there is an increasing need for palliative care services that are today viewed as complementary to medical interventions. 3-5 The current definitions of palliative care address much more than end-of-life care and include the early stages of a condition. 4-7 Services typically considered as palliative include respiratory care to improve functioning and maintain quality of life, case management, counseling about decision-making as the disease progresses, legal planning like advanced directives, and other supportive services, all of which are critical in DMD. 3,5,8-10 Despite the documented importance of palliative care overall, there has been some debate about its role in the care of individuals with neuromuscular disorders. 11
Background-Individuals with congenital heart defects (CHDs) are recommended to receive all inpati... more Background-Individuals with congenital heart defects (CHDs) are recommended to receive all inpatient cardiac and noncardiac care at facilities that can offer specialized care. We describe geographic accessibility to such centers in New York State and determine several factors associated with receiving care there. Methods-We used inpatient hospitalization data from the Statewide Planning and Research Cooperative System (SPARCS) in New York State 2008-2013. In the absence of specific adult CHD care center designations during our study period, we identified pediatric/adult and adult-only cardiac surgery centers through the Cardiac Surgery Reporting System to estimate age-based specialized care. We calculated one-way drive and public transit time (in minutes) from residential address to centers using R gmapsdistance package and the Google Maps Distance Application Programming Interface (API). We calculated prevalence ratios using modified Poisson regression
Introduction: Palliative care services that address physical pain and emotional, psychosocial, an... more Introduction: Palliative care services that address physical pain and emotional, psychosocial, and spiritual needs may benefit individuals with Duchenne muscular dystrophy (DMD). Methods: The objective of this study was to describe the palliative care services that families of males with DMD report they receive. A questionnaire was administered to families of males with DMD born prior to January 1, 1982. Thirtyfour families responded. Results: Most families (85%) had never heard the term palliative care. Only attendant care and skilled nursing services showed much usage, with 44% and 50% indicating receipt of these services, respectively. Receipt of other services was reported less frequently: pastoral care (27%); respite care (18%); pain management (12%); and hospice care (6%). Only 8 respondents (25%) reported having any type of directive document in place. Conclusion: The data suggest a need for improved awareness of palliative care and related services among families of young men with DMD.
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