Evidence map›Paper›PMID 35191118›Full record

ArticleJournal 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, S Garcia-Minaur, G M Repetto, M van den Bree, M Fischer, S Jacquemont, R Barzilay, A M Maillard and 5 more

Open access · bronzeAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of intellectual disability research : JIDR, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
0.2field-weighted citation impact, top 54% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 3 citations in OpenAlex.

  1. Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

15 authors at 11 institutions in 9 countries.

L K WhiteLifespan Brain Institute, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.ORCID 0000-0002-6394-4768
T B CrowleyLifespan Brain Institute, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.
B FinucaneGeisinger Autism & Developmental Medicine Institute, Geisinger Health System, Lewisburg, PA, USA.
S Garcia-MinaurInstituto de Genética Médica y Molecular, Hospital Universitario La Paz, Madrid, Spain.
G M RepettoCenter for Genetics and Genomics, Facultad de Medicina Clínica Alemana - Universidad del Desarrollo, Santiago, Chile.
M van den BreeMedical Research Council Centre for Neuropsychiatric Genetics and Genomics, Division of Psychological Medicine and Clinical Neurosciences, Cardiff University, Cardiff, UK.
M FischerClinic and Policlinic for Psychiatry and Psychotherapy, University of Rostock, Rostock, Germany.
S JacquemontSainte Justine Research Center, University of Montreal, Montreal, Canada.
R BarzilayLifespan Brain Institute, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.
A M MaillardService des Troubles du Spectre de l'Autisme (STSA), Lausanne University Hospital, Lausanne, Switzerland.
K A DonaldRed Cross War Memorial Children's Hospital, University of Cape Town, Cape Town, South Africa.
R E GurLifespan Brain Institute, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.
A S BassettCentre for Addiction and Mental Health, University Health Network and Department of Psychiatry, University of Toronto, Toronto, Canada.
A SwillenCenter for Human Genetics, University Hospital Leuven and Department of Human Genetics, KU Leuven, Leuven, Belgium.
D M McDonald-McGinnLifespan Brain Institute, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.
Children's Hospital of Philadelphia · USAutism & Developmental Medicine Institute · USCardiff Council · GBCenter for Human Genetics · USCentre Hospitalier Universitaire Sainte-Justine · CAHospital Universitario La Paz · ESUniversidad del Desarrollo · CLUniversity Health Network · CAUniversity of Cape Town · ZAUniversity of Lausanne · CHUniversity of Rostock · DE

Funding

Leveraging rare genetic etiologies to advance knowledge and treatment of neurpsychiatric disordersU01MH119705 · NIMH · GEISINGER CLINIC · PI LEDBETTER, DAVID H., MARTIN, CHRISTA LESE · 2019 to 2023
$9.2M
1/9: Dissecting the effects of genomic variants on nenriched for neuropsychiatric disorderseurobehavioral dimensions in CNVs U01MH119738 · NIMH · UNIVERSITY OF PENNSYLVANIA · PI GUR, RAQUEL E · 2019 to 2023
$3.2M
Medical Research Council MR/L010305/1NIMH NIH HHS 1U01MH119738NIMH NIH HHS U01 MH119705NIMH NIH HHS U01 MH119738
6 · The paper itself

Abstract

backgroundThe 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.

methodsThe University of Pennsylvania COVID-19 Stressor List and care disruption questions were circulated by 22 advocacy groups in English and 11 other languages.

resultsA 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.

conclusionsWidespread 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.

Indexed as

COVID-19DNA Copy Number VariationsCaregiversChromosomesHumansPandemics22q11.2 deletion syndrome22q11.2 duplication syndromecopy number variations (CNVs)COVID-19neurodevelopmental psychiatric disorders (NPDs)

Identifiers

PMID35191118
PMCPMC9725107
OpenAlexW4212794890

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.