Edmondson Mary C, Goodman Lavonne
Black Mountain Neuro-Medical Treatment Center, Black Mountain, North Carolina, United States.
Huntington's Disease Drug Works, Lake Forest Park, WA, United States.
Handb Clin Neurol. 2017;144:167-178. doi: 10.1016/B978-0-12-801893-4.00014-6.
Providing medical care for people and families affected by Huntington disease (HD) can be a rewarding effort when realistic goals of improved quality of life and optimized functional status are set. Multiple disease symptoms can remit or improve with currently available pharmacologic and behavioral interventions, even though barriers exist that interfere with access to treatment. Connecting expert multidisciplinary teams with community-based care, developing treatment guidelines, and involving the HD family community in quality improvements can achieve an integrated system of health care delivery. Engaging people with HD in high-quality compassionate care will not only improve lives, it will also encourage participation in clinical trials that search for disease-modifying treatments that will reduce or bring the suffering of HD to an end.
当设定改善生活质量和优化功能状态的现实目标时,为受亨廷顿舞蹈症(HD)影响的个人和家庭提供医疗护理是一项有意义的工作。尽管存在妨碍获得治疗的障碍,但目前可用的药物和行为干预措施可以使多种疾病症状得到缓解或改善。将专家多学科团队与社区护理联系起来、制定治疗指南并让HD患者家庭社区参与质量改进,可实现一个综合的医疗保健提供系统。让HD患者接受高质量的关怀护理不仅会改善生活,还会鼓励他们参与临床试验,这些试验旨在寻找能够减轻或终结HD痛苦的疾病修正疗法。