Impact of the coronavirus pandemic on mental health and health care in adults with neurofibromatosis: Patient perspectives from an online survey.
Am J Med Genet A
; 188(1): 71-82, 2022 01.
Article
in English
| MEDLINE | ID: covidwho-1427048
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.
Keywords
Full text:
Available
Collection:
International databases
Database:
MEDLINE
Main subject:
Anxiety
/
Stress, Psychological
/
Mental Health
/
Telemedicine
/
Neurofibromatoses
/
COVID-19
Type of study:
Experimental Studies
/
Observational study
/
Randomized controlled trials
Limits:
Adolescent
/
Adult
/
Aged
/
Female
/
Humans
/
Male
/
Middle aged
Country/Region as subject:
North America
/
Europa
Language:
English
Journal:
Am J Med Genet A
Journal subject:
Genetics, Medical
Year:
2022
Document Type:
Article
Affiliation country:
Ajmg.a.62490
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