Division of Medical Genetics, Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts, USA.
Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA.
Am J Med Genet A. 2021 Jun;185(6):1767-1775. doi: 10.1002/ajmg.a.62169. Epub 2021 Mar 17.
Specialty centers improve care for patients with Down syndrome. The cohort of adults with Down syndrome is increasing, but the capacity for specialty centers to meet their medical care needs is unknown. Electronic survey of staff of specialty clinics for adults with Down syndrome was conducted. Review of online clinic listings, and calculation of the number of adults with Down syndrome were performed. Analysis identified the percent of adults with Down syndrome who could have their medical care needs met in a current specialty clinic. Fourteen specialty clinics report providing care for 4038 adults with Down syndrome. Respondents reported gaps in care including: limitations of existing clinics, need for additional clinics, and knowledgeable health professionals in Down syndrome. Survey-respondent clinic capacity would meet needs of 3% of adults with Down syndrome. Twenty-five clinics for adults with Down syndrome were listed online with capacity to care for 6517 adults with Down syndrome meeting the needs of 5% of the population. Additional clinic capacity is needed to meet the needs of adults with Down syndrome. Survey of existing clinics provides guidance to create additional clinics, including: must-have team members, current sources of clinic financial support, and gaps in current clinical care.
专业中心改善了唐氏综合征患者的护理。唐氏综合征患者的成年人群体正在增加，但专业中心满足他们医疗需求的能力尚不清楚。对成人唐氏综合征专业诊所的工作人员进行了电子调查。对在线诊所名单进行了审查，并计算了唐氏综合征成年患者的数量。分析确定了在现有专业诊所中可以满足其医疗需求的唐氏综合征成年患者的比例。有 14 家专业诊所报告为 4038 名唐氏综合征成年患者提供护理。受访者报告存在护理方面的差距，包括：现有诊所的局限性、需要增设诊所以及唐氏综合征方面的知识型医疗专业人员。调查对象诊所的能力将满足 3%的唐氏综合征成年患者的需求。在线列出了 25 家针对唐氏综合征成年患者的诊所，有能力为满足 5%人群需求的 6517 名唐氏综合征成年患者提供护理。需要增加诊所的容量以满足唐氏综合征成年患者的需求。对现有诊所的调查为创建额外的诊所提供了指导，包括：必备的团队成员、诊所当前的资金来源以及当前临床护理方面的差距。
