亨廷顿舞蹈病功能诊断与治疗门诊：达成共识：长期护理机构程序如何辅助专科诊断与治疗

Huntington's Disease Outpatient Clinic for Functional Diagnosis and Treatment: Coming to Consensus: How Long Term Care Facility Procedures Complement Specialist Diagnosis and Treatment.

作者信息

Veenhuizen Ruth, Nijsten Hanneke, van Roosmalen Paul, Lammertsen Karen, Stor Tom, de Jager Lia, de Man Jesseke, van der Doelen Rina, Landa Karin, Grond Vera, Heffels Joyce, Groenewoud Rinske, Rovers Luce, Bakker Christian, Leiwakabessy Saskia, van der Wedden Dirk, van Blitterswijk Jacqueline, van den Bosch Dieuwke

机构信息

Noorderbreedte Care group, Leeuwarden, The Netherlands.

Department of Epidemiology and Biostatistics, Amsterdam Public Health research institute, VU University Medical Center, Amsterdam, The Netherlands.

出版信息

J Huntingtons Dis. 2018;7(2):189-191. doi: 10.3233/JHD-180298.

DOI:10.3233/JHD-180298

PMID:29843250

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6004894/

Abstract

Huntington's disease (HD) patients and families deserve expert treatment and care throughout their lives, but uniformity in functional diagnosis and treatment was lacking. In the aim of reaching this uniformity on day-to-day treatment and care offered by multidisciplinary outreach teams from Dutch long term care facilities for ambulatory HD patients, a consensus trajectory was started to harmonise our care programme with international standards and within the country. The consensus statements, given as supplementary material, should lead to expert treatment and care for HD families throughout the Netherlands and this manuscript should contribute and revitalise a global discussion on standards of treatment and care.

摘要

亨廷顿舞蹈症（HD）患者及其家庭在其一生中都应得到专业的治疗和护理，但在功能诊断和治疗方面缺乏一致性。为了使荷兰长期护理机构为非卧床HD患者提供的多学科外展团队在日常治疗和护理中实现这种一致性，我们启动了一项共识计划，以使我们的护理方案与国际标准以及国内标准保持一致。作为补充材料给出的共识声明应能为荷兰各地的HD家庭带来专业的治疗和护理，并且本手稿应有助于推动并振兴关于治疗和护理标准的全球讨论。