Hurvitz Edward A, Whitney Daniel G, Waldron-Perrine Brigid, Ryan Dayna, Haapala Heidi J, Schmidt Mary, Gray Cathryn, Peterson Mark D
Department of Physical Medicine and Rehabilitation, Michigan Medicine, University of Michigan, Ann Arbor, MI, United States.
Institute for Healthcare Policy and Innovation, Michigan Medicine, University of Michigan, Ann Arbor, MI, United States.
Front Neurol. 2021 Sep 16;12:734139. doi: 10.3389/fneur.2021.734139. eCollection 2021.
As individuals with cerebral palsy (CP) age, they face unique challenges which complicate their ability to access and receive appropriate health care. These problems exist at the level of the health care system, the clinician, and the individual. At the system level, there is an inadequate number of professionals who are informed of and interested in the care of adults with CP. Pediatric clinicians prefer treating children, and adult caregivers are not knowledgeable about and may feel less competent about CP. Pediatric care does not translate well to the adult population, and information about best practices for adults is just starting to develop. Differences in the physiologic development of individuals with CP render well-established clinical protocols for risk screening of chronic diseases less effective. Moreover, lack of supportive resources decreases a caregiver's sense of self-efficacy in treating this population. The patient's ability to navigate these barriers is complicated by the high prevalence of comorbid cognitive impairment and mental health issues including anxiety, depression, and other psychiatric disorders; a bidirectional relationship between challenges in navigating care/needs and comorbid mental health conditions appears likely. Many patients have additional barriers related to social determinants of health, such as access to transportation, accessible health care facilities, and other personal and environmental factors that may impede health maintenance and wellness. Increasing and disseminating knowledge, harnessing the power of new technologies such as telemedicine, and addressing mental health issues are some of the methods that are available to help adults with CP navigate this road.
随着脑瘫（CP）患者年龄的增长，他们面临着独特的挑战，这些挑战使他们获得和接受适当医疗保健的能力变得复杂。这些问题存在于医疗保健系统、临床医生和患者个体层面。在系统层面，了解并关注成年脑瘫患者护理的专业人员数量不足。儿科临床医生更倾向于治疗儿童，而成人护理人员对脑瘫了解不足，可能觉得自己在这方面能力欠佳。儿科护理模式并不完全适用于成年人群体，关于成人最佳治疗实践的信息才刚刚开始发展。脑瘫患者生理发育的差异使得既定的慢性病风险筛查临床方案效果不佳。此外，缺乏支持资源降低了护理人员治疗这一群体的自我效能感。患者应对这些障碍的能力因共病认知障碍和心理健康问题（包括焦虑、抑郁和其他精神障碍）的高患病率而变得复杂；在应对护理挑战/需求与共病心理健康状况之间似乎存在双向关系。许多患者还面临与健康的社会决定因素相关的其他障碍，例如交通便利程度、可及的医疗保健设施以及可能妨碍健康维护和健康状况的其他个人和环境因素。增加和传播知识、利用远程医疗等新技术的力量以及解决心理健康问题是帮助成年脑瘫患者应对这一情况的一些可用方法。
