{"doi":"10.1002/ajmg.a.62490","title":"Impact of the coronavirus pandemic on mental health and health care in adults with neurofibromatosis: Patient perspectives from an online survey","abstract":"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.","journal":"American Journal of Medical Genetics Part A","year":2021,"id":198621,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":null,"corpus_rank":null,"citation_count":10,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.9599,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2021-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":496052,"name":"Stephanie Reda","orcid":"0000-0002-8591-2804","position":1,"is_corresponding":false},{"id":109189,"name":"Staci Martin","orcid":"0000-0002-9342-4173","position":2,"is_corresponding":false},{"id":773898,"name":"Nour Al Ghriwati","orcid":"0000-0001-5065-545X","position":3,"is_corresponding":false},{"id":773899,"name":"Melissa Baker","orcid":"0000-0001-7064-5881","position":4,"is_corresponding":false},{"id":367223,"name":"Daniel Berg","orcid":"0000-0002-9181-8902","position":5,"is_corresponding":false},{"id":774448,"name":"Gregg Erickson","orcid":null,"position":6,"is_corresponding":false},{"id":774449,"name":"Barbara Franklin","orcid":null,"position":7,"is_corresponding":false},{"id":773900,"name":"Vanessa L. Merker","orcid":"0000-0002-4542-5227","position":8,"is_corresponding":false},{"id":774450,"name":"Beverly Oberlander","orcid":null,"position":9,"is_corresponding":false},{"id":774451,"name":"Stephanie Reeve","orcid":null,"position":10,"is_corresponding":false},{"id":773901,"name":"Claas Röhl","orcid":"0000-0003-0320-9435","position":11,"is_corresponding":false},{"id":639477,"name":"Tena Rosser","orcid":null,"position":12,"is_corresponding":false},{"id":448365,"name":"Mary Anne Toledo‐Tamula","orcid":null,"position":13,"is_corresponding":false},{"id":268225,"name":"Ana‐Maria Vranceanu","orcid":"0000-0003-3994-6488","position":14,"is_corresponding":false},{"id":109180,"name":"Pamela L. Wolters","orcid":"0000-0001-9319-6281","position":0,"is_corresponding":true}],"reference_count":52,"raw_metadata":null,"created_at":"2026-07-18T23:50:31.857233Z","pmid":"34536052","pmcid":null,"fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}