儿童期起病的肌营养不良症家庭的需求管理。
Needs management in families affected by childhood-onset dystrophinopathies.
作者信息
Conway Kristin M, Eichinger Katy, Trout Christina, Romitti Paul A, Mathews Katherine D, Pandya Shree K
机构信息
Department of Epidemiology, The University of Iowa, Iowa City, IA, USA.
Department of Neurology, University of Rochester, Rochester, NY, USA.
出版信息
SAGE Open Med. 2019 Mar 2;7:2050312119834470. doi: 10.1177/2050312119834470. eCollection 2019.
PURPOSE
To collect information about the needs of families affected by childhood-onset dystrophinopathies residing in the United States.
METHODS
Individuals with an eligible dystrophinopathy were identified by the Muscular Dystrophy Surveillance, Tracking, and Research network. Between September 2008 and December 2012, 272 caregivers completed a 48-item survey about needs related to information, healthcare services, psychosocial issues, finances, caregiver demographics, and the individual's functioning.
RESULTS
Overall, at least 80% of the survey items were identified as needs for more than one-half of caregivers. Among the needs identified, physical health and access to information were currently managed for most caregivers. Items identified as needed but managed less consistently were funding for needs not covered by insurance and psychosocial support.
CONCLUSIONS
Healthcare providers, public health practitioners, and policymakers should be aware of the many needs reported by caregivers, and focus on addressing gaps in provision of needed financial and psychosocial services.
目的
收集居住在美国、受儿童期起病的肌营养不良症影响的家庭的需求信息。
方法
通过肌肉萎缩症监测、追踪和研究网络识别出符合条件的肌营养不良症患者。在2008年9月至2012年12月期间，272名照料者完成了一项包含48个条目的调查，内容涉及与信息、医疗服务、心理社会问题、财务、照料者人口统计学特征以及个体功能相关的需求。
结果
总体而言，至少80%的调查条目被超过半数的照料者认定为需求。在所确定的需求中，大多数照料者目前已解决了身体健康和信息获取方面的问题。被认定为有需求但处理得不太一致的条目包括未被保险覆盖的需求的资金以及心理社会支持。
结论
医疗保健提供者、公共卫生从业者和政策制定者应了解照料者报告的诸多需求，并专注于解决所需财务和心理社会服务提供方面的差距。
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