Pediatric Oncology Branch, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration.
Am J Med Genet A. 2022 Jan;188(1):71-82. doi: 10.1002/ajmg.a.62490. Epub 2021 Sep 18.
The coronavirus pandemic increased anxiety and stress and prevented access to health care worldwide; it is unclear how COVID-19 affected adults with a multisystem genetic disorder such as neurofibromatosis (NF). An anonymous online survey was distributed through an international registry and foundations to adults with NF (June-August 2020) to assess the impact of the pandemic on mental health and NF health care. Six hundred and thirteen adults (18-81 years; M = 45.7) with NF1 (77.8%), NF2 (14.2%), and schwannomatosis (7.8%) provided complete responses. Respondents rated moderate-to-high amounts of worry about the impact of COVID-19 on their emotional (46.3%) and physical health (46.7%), and 54.8% endorsed moderate-to-high pandemic-related stress. Adults with diagnosed/suspected mental health disorders or moderate-to-severe NF symptom impact as well as females endorsed higher COVID-19 stress (ps < 0.01). Less than half who missed a doctor's appointment for their NF care (43.4%) used telehealth. Of these, 33.3% and 46.2% reported that telehealth met their needs to a moderate or high degree, respectively. Results indicated that subgroups of adults with NF experience higher COVID-19-related worries and stress and may need additional support. Furthermore, telehealth is under-utilized and could help NF providers connect with patients, although improved delivery and patient training may facilitate expanded use of these services.
冠状病毒大流行增加了全世界的焦虑和压力，并阻碍了医疗保健的获取；目前尚不清楚 COVID-19 对患有神经纤维瘤病（NF）等多系统遗传疾病的成年人有何影响。2020 年 6 月至 8 月，通过国际登记处和基金会向 NF 成年人（18-81 岁；M=45.7）分发了匿名在线调查，以评估大流行对心理健康和 NF 保健的影响。613 名 NF1（77.8%）、NF2（14.2%）和 schwannomatosis（7.8%）患者提供了完整的答复。受访者对 COVID-19 对其情绪（46.3%）和身体健康（46.7%）的影响表示出中等至高度的担忧，并且 54.8%的人表示有中度至高度的大流行相关压力。有诊断/疑似心理健康障碍或中度至重度 NF 症状影响的成年人以及女性，对 COVID-19 的压力更高（p<0.01）。因 NF 护理而错过医生预约的成年人中，只有不到一半（43.4%）使用了远程医疗。在这些人中，分别有 33.3%和 46.2%的人报告说，远程医疗在满足其需求方面程度适中或很高。结果表明，NF 成年人的亚组经历了更高的与 COVID-19 相关的担忧和压力，可能需要额外的支持。此外，远程医疗的使用率较低，并且可以帮助 NF 提供者与患者联系，但改善交付和患者培训可能会促进这些服务的更广泛使用。
