The COVID-19 pandemic's impact on worry and medical disruptions reported by individuals with chromosome 22q11.2 copy number variants and their caregivers.
One third of 22q11.2 families lost needed medical care during COVID-19, so BCBAs should crisis-proof service plans now.
01Research in Context
What this study did
Lee et al. (2022) sent an online survey to families living with 22q11.2 deletion or duplication syndromes.
Five hundred and twelve caregivers from 23 countries answered questions about COVID-19 worry and medical care delays.
What they found
One in three families said the pandemic seriously disrupted needed medical care.
Worry levels climbed later in the pandemic, even after vaccines arrived.
How this fits with other research
Wu et al. (2015) showed children with autism already use twice as many doctor visits each year.
Their data give a pre-COVID baseline: expect high medical need in any neurogenetic group.
Kaan et al. (2025) also used parent surveys and found added family stress when a second child arrives.
Together these papers say: neurogenetic families run close to capacity; any shock—pandemic, new baby, move—tips the system.
Why it matters
If you serve a client with 22q11.2, build a back-up plan for missed appointments and delayed prescriptions.
Add extra check-ins during future waves or other crises.
Share the survey numbers with insurers to justify telehealth or extended authorizations.
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02At a glance
03Original abstract
BACKGROUND: The world has suffered immeasurably during the COVID-19 pandemic. Increased distress and mental and medical health concerns are collateral consequences to the disease itself. The Genes to Mental Health (G2MH) Network consortium sought to understand how individuals affected by the rare copy number variations of 22q11.2 deletion and duplication syndrome, associated with neurodevelopmental/neuropsychiatric conditions, were coping. The article focuses on worry and disruptions in medical care caused by the pandemic. METHODS: The University of Pennsylvania COVID-19 Stressor List and care disruption questions were circulated by 22 advocacy groups in English and 11 other languages. RESULTS: A total of 512 people from 23 countries completed the survey; most were caregivers of affected individuals. Worry about family members acquiring COVID-19 had the highest average endorsed worry, whilst currently having COVID-19 had the lowest rated worry. Total COVID-19 worries were higher in individuals completing the survey towards the end of the study (later pandemic wave); 36% (n = 186) of the sample reported a significant effect on health due to care interruption during the pandemic; 44% of individuals (n = 111) receiving care for their genetic syndrome in a hospital setting reported delaying appointments due to COVID-19 fears; 12% (n = 59) of the sample reported disruptions to treatments; and of those reporting no current disruptions, 59% (n = 269) worried about future disruptions if the pandemic continued. Higher levels of care disruptions were related to higher COVID-19 worries (Ps < 0.005). Minimal differences by respondent type or copy number variation type emerged. CONCLUSIONS: Widespread medical care disruptions and pandemic-related worries were reported by individuals with 22q11.2 syndrome and their family members. Reported worries were broadly consistent with research results from prior reports in the general population. The long-term effects of COVID-19 worries, interruptions to care and hospital avoidance require further study.
Journal of intellectual disability research : JIDR, 2022 · doi:10.1111/jir.12831