Evidence map›Paper›PMID 40114232›Full record

ArticleOrphanet journal of rare diseases2025

Trajectories of depression and anxiety in adults with rare disorders across 13 months during the COVID-19 pandemic.

Øyvind Halsøy, Stian Orm, Hugo Cogo-Moreira, Wendy K Silverman, Krister Fjermestad

Abstract read
In one paragraph

Article in Orphanet journal of rare diseases, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

What it found

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2 · The registry

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3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

5 authors.

Øyvind HalsøyFrambu Resource Center for Rare Disorders, Siggerud, Norway. oyvind.halsoy@gmail.com.ORCID http://orcid.org/0000-0001-5138-9982
Stian OrmFrambu Resource Center for Rare Disorders, Siggerud, Norway.
Hugo Cogo-MoreiraDepartment of Education, ICT and Learning, Østfold University College, Fredrikstad, Norway.
Wendy K SilvermanSchool of Medicine, Yale University, New Haven, USA.
Krister FjermestadFrambu Resource Center for Rare Disorders, Siggerud, Norway.

Funding

Helse Sør-Øst RHF 2022092
6 · The paper itself

Abstract

backgroundAdults with rare disorders experience multiple psychosocial risk factors beyond their medical symptoms, including impaired quality of life, social isolation, loneliness, and mental health problems. These risk factors were amplified during the COVID-19 pandemic, when health care appointments and social/vocational activities were reduced or cancelled. There is a lack of longitudinal data tracking this population over time, making the long term consequences uncertain.

methodsWe conducted a monthly survey of 58 adults aged between 19 and 71 years (M = 45.1 years, SD = 12.6) with rare disorders across 13 months during the COVID-19 pandemic in Norway. We measured symptoms of anxiety and depression with the Hopkins Symptom Checklist-5. Covid fear was measured with the Coronavirus Anxiety Scale. We examined the mental health and covid fear trajectories across the 13 months with multi-level growth curve models with repeated measures at Level 1 and individuals at Level 2. To account for differences in governmental restrictions throughout the 13 months, we used the stringency index from The Oxford Covid-19 Government Response Tracker.

resultsThe growth models indicated stable levels of anxiety and depression over 13 months that were elevated compared to existing population data and were unpredicted by pandemic restrictions. The level of covid fear was significantly associated with the levels of anxious and depressive symptoms.

conclusionsThe current study found elevated and stable trajectories of mental health symptoms throughout the pandemic for persons with rare disorders. This highlights the necessity of investigating the long-lasting influence of the pandemic on mental health among individuals with rare disorders.

Indexed as

AnxietyCOVID-19DepressionRare DiseasesAdultAgedFemaleHumansMaleMiddle AgedNorwayPandemicsQuality of LifeSARS-CoV-2Young AdultAdultsCovid fearLongitudinal studiesMental healthRare disorders

Identifiers

PMID40114232
PMCPMC11924719

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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.