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An anonymous online survey was distributed through an international registry and foundations to adults with NF (June\u2013August 2020) to assess the impact of the pandemic on mental health and NF health care. Six hundred and thirteen adults (18\u201381\u2009years; <jats:italic>M<\/jats:italic>\u00a0=\u00a045.7) with NF1 (77.8%), NF2 (14.2%), and schwannomatosis (7.8%) provided complete responses. Respondents rated moderate\u2010to\u2010high amounts of worry about the impact of COVID\u201019 on their emotional (46.3%) and physical health (46.7%), and 54.8% endorsed moderate\u2010to\u2010high pandemic\u2010related stress. Adults with diagnosed\/suspected mental health disorders or moderate\u2010to\u2010severe NF symptom impact as well as females endorsed higher COVID\u201019 stress (<jats:italic>p<\/jats:italic>s\u2009&lt;\u20090.01). 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\u201019\u2010related worries and stress and may need additional support. Furthermore, telehealth is under\u2010utilized and could help NF providers connect with patients, although improved delivery and patient training may facilitate expanded use of these services.<\/jats:p>","DOI":"10.1002\/ajmg.a.62490","type":"journal-article","created":{"date-parts":[[2021,9,18]],"date-time":"2021-09-18T09:43:59Z","timestamp":1631958239000},"page":"71-82","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["Impact of the coronavirus pandemic on mental health and health care in adults with neurofibromatosis: Patient perspectives from an online survey"],"prefix":"10.1002","volume":"188","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9319-6281","authenticated-orcid":false,"given":"Pamela L.","family":"Wolters","sequence":"first","affiliation":[{"name":"Pediatric Oncology Branch National Cancer Institute, National Institutes of Health  Bethesda Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Stephanie","family":"Reda","sequence":"additional","affiliation":[{"name":"Pediatric Oncology Branch National Cancer Institute, National Institutes of Health  Bethesda Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Staci","family":"Martin","sequence":"additional","affiliation":[{"name":"Pediatric Oncology Branch National Cancer Institute, National Institutes of Health  Bethesda Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nour","family":"Al Ghriwati","sequence":"additional","affiliation":[{"name":"Pediatric Oncology Branch National Cancer Institute, National Institutes of Health  Bethesda Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Melissa","family":"Baker","sequence":"additional","affiliation":[{"name":"Pediatric Oncology Branch National Cancer Institute, National Institutes of Health  Bethesda Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Dale","family":"Berg","sequence":"additional","affiliation":[{"name":"Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gregg","family":"Erickson","sequence":"additional","affiliation":[{"name":"Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration"},{"name":"NF Network  Wheaton Illinois USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Barbara","family":"Franklin","sequence":"additional","affiliation":[{"name":"Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Vanessa L.","family":"Merker","sequence":"additional","affiliation":[{"name":"Department of Neurology and Cancer Center Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Beverly","family":"Oberlander","sequence":"additional","affiliation":[{"name":"Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration"},{"name":"NF Network  Wheaton Illinois USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Stephanie","family":"Reeve","sequence":"additional","affiliation":[{"name":"Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Claas","family":"Rohl","sequence":"additional","affiliation":[{"name":"Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration"},{"name":"NF Kinder NF Patients United  Vienna Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tena","family":"Rosser","sequence":"additional","affiliation":[{"name":"Division of Neurology Children's Hospital Los Angeles  Los Angeles California USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mary Anne","family":"Toledo\u2010Tamula","sequence":"additional","affiliation":[{"name":"Clinical Research Directorate (CRD) Frederick National Laboratory for Cancer Research  Frederick Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3994-6488","authenticated-orcid":false,"given":"Ana\u2010Maria","family":"Vranceanu","sequence":"additional","affiliation":[{"name":"Department of Psychiatry, Massachusetts General Hospital Harvard Medical School  Boston Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2021,9,18]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.2013.1054"},{"key":"e_1_2_9_3_1","first-page":"75","volume-title":"Handbook of clinical neurology","author":"Anderson J. 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