{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,27]],"date-time":"2026-01-27T08:54:39Z","timestamp":1769504079059,"version":"3.49.0"},"reference-count":33,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2022,2,21]],"date-time":"2022-02-21T00:00:00Z","timestamp":1645401600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000025","name":"National Institute of Mental Health","doi-asserted-by":"publisher","award":["1U01MH119738"],"award-info":[{"award-number":["1U01MH119738"]}],"id":[{"id":"10.13039\/100000025","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J intellect Disabil Res"],"published-print":{"date-parts":[[2022,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>The world has suffered immeasurably during the COVID\u201019 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>The University of Pennsylvania COVID\u201019 Stressor List and care disruption questions were circulated by 22 advocacy groups in English and 11 other languages.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A total of 512 people from 23 countries completed the survey; most were caregivers of affected individuals. Worry about family members acquiring COVID\u201019 had the highest average endorsed worry, whilst currently having COVID\u201019 had the lowest rated worry. Total COVID\u201019 worries were higher in individuals completing the survey towards the end of the study (later pandemic wave); 36% (<jats:italic>n<\/jats:italic>\u00a0=\u00a0186) of the sample reported a significant effect on health due to care interruption during the pandemic; 44% of individuals (<jats:italic>n<\/jats:italic>\u00a0=\u00a0111) receiving care for their genetic syndrome in a hospital setting reported delaying appointments due to COVID\u201019 fears; 12% (<jats:italic>n<\/jats:italic>\u00a0=\u00a059) of the sample reported disruptions to treatments; and of those reporting no current disruptions, 59% (<jats:italic>n<\/jats:italic>\u00a0=\u00a0269) worried about future disruptions if the pandemic continued. Higher levels of care disruptions were related to higher COVID\u201019 worries (<jats:italic>P<\/jats:italic>s\u00a0&lt;\u00a00.005). Minimal differences by respondent type or copy number variation type emerged.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Widespread medical care disruptions and pandemic\u2010related 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\u2010term effects of COVID\u201019 worries, interruptions to care and hospital avoidance require further study.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jir.12918","type":"journal-article","created":{"date-parts":[[2022,2,22]],"date-time":"2022-02-22T07:22:40Z","timestamp":1645514560000},"page":"313-322","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["The COVID\u201019 pandemic's impact on worry and medical disruptions reported by individuals with chromosome 22q11.2 copy number variants and their caregivers"],"prefix":"10.1111","volume":"66","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6394-4768","authenticated-orcid":false,"given":"L. K.","family":"White","sequence":"first","affiliation":[{"name":"Lifespan Brain Institute Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania  Philadelphia PA USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"T. B.","family":"Crowley","sequence":"additional","affiliation":[{"name":"Lifespan Brain Institute Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania  Philadelphia PA USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"B.","family":"Finucane","sequence":"additional","affiliation":[{"name":"Geisinger Autism &amp; Developmental Medicine Institute Geisinger Health System  Lewisburg PA USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"S.","family":"Garcia\u2010Minaur","sequence":"additional","affiliation":[{"name":"Instituto de Gen\u00e9tica M\u00e9dica y Molecular Hospital Universitario La Paz  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"G. M.","family":"Repetto","sequence":"additional","affiliation":[{"name":"Center for Genetics and Genomics Facultad de Medicina Cl\u00ednica Alemana \u2013 Universidad del Desarrollo  Santiago Chile"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"M.","family":"van den Bree","sequence":"additional","affiliation":[{"name":"Medical Research Council Centre for Neuropsychiatric Genetics and Genomics, Division of Psychological Medicine and Clinical Neurosciences Cardiff University  Cardiff UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"M.","family":"Fischer","sequence":"additional","affiliation":[{"name":"Clinic and Policlinic for Psychiatry and Psychotherapy University of Rostock  Rostock Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"S.","family":"Jacquemont","sequence":"additional","affiliation":[{"name":"Sainte Justine Research Center University of Montreal  Montreal Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"R.","family":"Barzilay","sequence":"additional","affiliation":[{"name":"Lifespan Brain Institute Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania  Philadelphia PA USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"A. 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