"It seems like COVID-19 now is the only disease present on Earth": living with a rare or undiagnosed disease during the COVID-19 pandemic.
"It seems like COVID-19 now is the only disease present on Earth": living with a rare or undiagnosed disease during the COVID-19 pandemic.
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DOI：
10.1038/s41436-020-01069-7
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发表时间：
2021-05
期刊：
影响因子：
--
通讯作者：
Tabor HK
中科院分区：
文献类型：
--
作者：
Halley MC;Stanley T;Maturi J;Goldenberg AJ;Bernstein JA;Wheeler MT;Tabor HK
患有罕见和未确诊疾病（RUD）的患者面临着重大的健康挑战，在COVID-19大流行期间可能会加剧。这项研究的目的是确定大流行对RUD患者的具体影响，以及改善支持和医疗保健服务的目标。我们于2020年4月21日至6月8日对RUD患者及其家属进行了一项在线调查，从76个RUD Facebook群组中招募。这些问题评估了患者的特征以及大流行对RUD诊断和管理的影响。受访者（n = 413），包括274 RUD患者和139名家庭成员，主要是女性和白色，虽然收入不同。大流行的影响包括（1）获得基本医疗保健的障碍，（2）限制性COVID-19探视政策对医疗保健环境中倡导能力的具体影响，（3）对COVID-19风险的不确定性和恐惧，（4）加剧身心健康挑战，（5）教育和治疗服务减少的影响扩大，及（6）疫情带来的意外积极变化。在COVID-19大流行期间，RUD患者和家庭面临着特定的严重挑战。迫切需要制定办法，在大流行病期间和之后缓解这些挑战。
Patients with rare and undiagnosed diseases (RUDs) face significant health challenges, which may be exacerbated during the COVID-19 pandemic. The goal of this study was to identify specific impacts of the pandemic on RUD patients, and targets for improving support and health-care access. We conducted an online survey of RUD patients and their family members from 21 April to 8 June 2020, recruited from 76 Facebook groups for RUDs. Questions assessed patient characteristics and impacts of the pandemic on RUD diagnosis and management. Respondents (n = 413), including 274 RUD patients and 139 family members, were predominantly female and white, though income varied. Impacts of the pandemic included (1) barriers to accessing essential health care, (2) specific impacts of restrictive COVID-19 visitation policies on ability to advocate in health-care settings, (3) uncertainty and fear regarding COVID-19 risk, (4) exacerbated physical and mental health challenges, (5) magnified impacts of reduced educational and therapeutic services, and (6) unexpected positive changes due to the pandemic. There are specific, serious challenges affecting RUD patients and families during the COVID-19 pandemic. There is an urgent need to develop approaches to mitigate these challenges both during and beyond the pandemic.
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