ArticleRheumatology advances in practice2021
A survey to understand the feelings towards and impact of COVID-19 on the households of juvenile dermato myositis patients from a parent or carer perspective.
Article in Rheumatology advances in practice, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed, 6 citations in OpenAlex.
- Perspectives and experiences of parents of children with juvenile dermatomyositis: a semi-structured interview study.Pediatric rheumatology online journal · 2025Article
- The impact of the COVID-19 pandemic on patients with juvenile idiopathic inflammatory myopathies.Pediatric rheumatology online journal · 2023Article
- Self-perceived disease activity was the strongest predictor of COVID-19 pandemic-related concerns in young people with autoimmune rheumatic diseases, irrespective of their gender, with females reporting higher concerns.Rheumatology advances in practice · 2022Article
Corrections and comments
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Authors and funding
6 authors at 1 institution in 1 country.
Funding
Abstract
objectivesThis aim of this study was to gain a better understanding of how parents and carers feel about the effects and impact of the coronavirus disease 2019 (COVID-19) pandemic lockdown and how this impacted upon their child/young person with JDM.
methodWe approached 139 participants from the JDM Cohort Biomarker Study (JDCBS), with specific consent to approach electronically for research studies. A secure electronic questionnaire with study introduction was sent to participants for their parents and carers around the UK to complete. It consisted of 20 questions about the impact of the pandemic on their child or young person's clinical care. Data were analysed quantitatively and qualitatively.
resultsThere were 76 (55%) responses to the survey. More than 50% of participants were actively being treated for their JDM at the point of survey completion as recorded by their parent or carer. More than 40% attested to disrupted treatment owing to COVID-19. The biggest impact upon clinical care was cancellation of appointments, initiating virtual appointments and extension of time between blood tests. Parents and carers expressed their own feelings of worry, concern and anxiety, but also those of their child or young person.
conclusionFamilies who have a child or young person with JDM have been affected by COVID-19. Qualitative comments highlight that it has been a very difficult time. Further investigation is required into this area and could be compared with research on the effects of COVID-19 on other patient groups with chronic disease.
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