PTOTSLPSurveyJournal of intellectual disability research : JIDR2022

The COVID-19 pandemic's impact on worry and medical disruptions reported by individuals with chromosome 22q11.2 copy number variants and their caregivers.

L K White, T B Crowley, B Finucane and 12 others

PMID 35191118

WHAT IT FOUND

Caregivers and patients with 22q11.2 syndromes reported widespread medical care disruptions, with 36% saying these harms significantly affected their health.

Contrary to expectations, their pandemic worry levels were similar to the general population, not higher.

Key findings

0136% of participants reported that pandemic-related care interruptions had a significant effect on their health.

02Rehabilitation services were the most frequently cancelled care (20%), and the most frequently delayed care (45%).

03Total COVID-19 worry scores in this cohort were broadly consistent with reports from the general population.

STILL TO COME

What they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs

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What it does not show

The sample was dominated by mothers of children with 22q11.2 CNVs from the United States, limiting generalizability to other caregiver types or regions. The study relied on online self-report data, which likely excluded individuals without digital access or skills. The 'timing' variable was a blunt categorization of three survey waves, which may not accurately reflect the fluctuating impact of the pandemic over time. It is unclear whether the reported worries and disruptions are specific to 22q11.2 syndromes or are common to neurodevelopmental disorders more broadly.

Declared interests

No conflicts of interest were declared by the authors.

The easy way to misread this

Do not assume that patients with 22q11.2 syndromes are more anxious about the pandemic than the general population. The study found their worry scores were similar to general population cohorts, so clinical attention should focus on the tangible impact of care disruptions rather than assuming heightened baseline anxiety.

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