{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,7,30]],"date-time":"2025-07-30T12:18:03Z","timestamp":1753877883778,"version":"3.41.2"},"reference-count":11,"publisher":"Oxford University Press (OUP)","issue":"3","license":[{"start":{"date-parts":[[2021,9,13]],"date-time":"2021-09-13T00:00:00Z","timestamp":1631491200000},"content-version":"vor","delay-in-days":255,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2021,8,31]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Objectives<\/jats:title>\n                  <jats:p>This 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.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Method<\/jats:title>\n                  <jats:p>We 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\u2019s clinical care. Data were analysed quantitatively and qualitatively.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>There 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.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>Families 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.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/rap\/rkab058","type":"journal-article","created":{"date-parts":[[2021,9,13]],"date-time":"2021-09-13T14:33:37Z","timestamp":1631543617000},"source":"Crossref","is-referenced-by-count":4,"title":["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"],"prefix":"10.1093","volume":"5","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7972-8066","authenticated-orcid":false,"given":"Meredyth Grace Llewellyn","family":"Wilkinson","sequence":"first","affiliation":[{"name":"Infection, Immunity and Inflammation Programme Research and Teaching Department, UCL Great Ormond Street Institute of Child Health"},{"name":"Centre for Adolescent Rheumatology Versus Arthritis at UCL, UCLH and GOSH, University College London"},{"name":"NIHR Biomedical Research Centre at GOSH, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Wing","family":"Wu","sequence":"additional","affiliation":[{"name":"Centre for Adolescent Rheumatology Versus Arthritis at UCL, UCLH and GOSH, University College London"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kathryn","family":"O\u2019Brien","sequence":"additional","affiliation":[{"name":"Infection, Immunity and Inflammation Programme Research and Teaching Department, UCL Great Ormond Street Institute of Child Health"},{"name":"Centre for Adolescent Rheumatology Versus Arthritis at UCL, UCLH and GOSH, University College London"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7044-5801","authenticated-orcid":false,"given":"Claire T","family":"Deakin","sequence":"additional","affiliation":[{"name":"Infection, Immunity and Inflammation Programme Research and Teaching Department, UCL Great Ormond Street Institute of Child Health"},{"name":"Centre for Adolescent Rheumatology Versus Arthritis at UCL, UCLH and GOSH, University College London"},{"name":"NIHR Biomedical Research Centre at GOSH, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lucy R","family":"Wedderburn","sequence":"additional","affiliation":[{"name":"Infection, Immunity and Inflammation Programme Research and Teaching Department, UCL Great Ormond Street Institute of Child Health"},{"name":"Centre for Adolescent Rheumatology Versus Arthritis at UCL, UCLH and GOSH, University College London"},{"name":"NIHR Biomedical Research Centre at GOSH, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0824-3878","authenticated-orcid":false,"given":"Polly","family":"Livermore","sequence":"additional","affiliation":[{"name":"Infection, Immunity and Inflammation Programme Research and Teaching Department, UCL Great Ormond Street Institute of Child Health"},{"name":"Centre for Adolescent Rheumatology Versus Arthritis at UCL, UCLH and GOSH, University College London"},{"name":"NIHR Biomedical Research Centre at GOSH, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[2021,9,13]]},"reference":[{"author":"Research & Evidence Team \u2013 Royal College of Paediatrics and Child Health.","key":"2021091618121997300_rkab058-B1"},{"key":"2021091618121997300_rkab058-B2","first-page":"1","article-title":"COVID-19 rapid guideline: children and young people who are immunocompromised | Guidance","author":"NICE","year":"2020"},{"first-page":"1","year":"2020","author":"Beesley","key":"2021091618121997300_rkab058-B3"},{"key":"2021091618121997300_rkab058-B4","doi-asserted-by":"crossref","first-page":"1255","DOI":"10.1093\/rheumatology\/kel099","article-title":"The Juvenile Dermatomyositis National Registry and Repository (UK and Ireland)\u2013clinical characteristics of children recruited within the first 5 yr","volume":"45","author":"McCann","year":"2006","journal-title":"Rheumatology (Oxford)"},{"key":"2021091618121997300_rkab058-B5","doi-asserted-by":"crossref","first-page":"137","DOI":"10.1093\/rheumatology\/keq261","article-title":"A national registry for juvenile dermatomyositis and other paediatric idiopathic inflammatory myopathies: 10 years\u2019 experience; the Juvenile Dermatomyositis National (UK and Ireland) Cohort Biomarker Study and Repository for Idiopathic Inflammatory Myopathies","volume":"50","author":"Martin","year":"2011","journal-title":"Rheumatology (Oxford)"},{"key":"2021091618121997300_rkab058-B6","doi-asserted-by":"crossref","first-page":"30","DOI":"10.1186\/s12969-019-0332-7","article-title":"Being on the juvenile dermatomyositis rollercoaster: a qualitative study","volume":"17","author":"Livermore","year":"2019","journal-title":"Pediatr Rheumatol"},{"key":"2021091618121997300_rkab058-B7","doi-asserted-by":"crossref","first-page":"461","DOI":"10.1016\/j.jval.2013.04.004","article-title":"Pediatric patient-reported outcome instruments for research to support medical product labeling: Report of the ISPOR PRO good research practices for the assessment of children and adolescents task force","volume":"16","author":"Matza","year":"2013","journal-title":"Value Health"},{"key":"2021091618121997300_rkab058-B8","doi-asserted-by":"crossref","first-page":"486","DOI":"10.1136\/archdischild-2017-313801","article-title":"Children and young people\u2019s versus parents\u2019 responses in an English national inpatient survey","volume":"103","author":"Hargreaves","year":"2018","journal-title":"Arch Dis Child"},{"key":"2021091618121997300_rkab058-B9","doi-asserted-by":"crossref","first-page":"158","DOI":"10.1186\/s12913-020-5012-2","article-title":"Patient satisfaction and survey response in 717 hospital surveys in Switzerland: a cross-sectional study","volume":"20","author":"Perneger","year":"2020","journal-title":"BMC Health Serv Res"},{"key":"2021091618121997300_rkab058-B10","doi-asserted-by":"crossref","first-page":"104062","DOI":"10.1016\/j.ejmg.2020.104062","article-title":"Impact of COVID-19 pandemic on patients with rare disease in Hong Kong","volume":"63","author":"Chung","year":"2020","journal-title":"Eur J Med Genet"},{"key":"2021091618121997300_rkab058-B11","first-page":"1","article-title":"Participant Information for parents\/carers and children aged 16-17 years study title: Coronavirus infection in primary or secondary immunosuppressed children","volume":"V:1.7","author":"de Graaf","year":"2020"}],"container-title":["Rheumatology Advances in Practice"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/academic.oup.com\/rheumap\/advance-article-pdf\/doi\/10.1093\/rap\/rkab058\/40357027\/rkab058.pdf","content-type":"application\/pdf","content-version":"am","intended-application":"syndication"},{"URL":"http:\/\/academic.oup.com\/rheumap\/article-pdf\/5\/3\/rkab058\/40396481\/rkab058.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"http:\/\/academic.oup.com\/rheumap\/article-pdf\/5\/3\/rkab058\/40396481\/rkab058.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,9,16]],"date-time":"2021-09-16T18:12:40Z","timestamp":1631815960000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/rheumap\/article\/doi\/10.1093\/rap\/rkab058\/6369525"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021]]},"references-count":11,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2021,8,31]]}},"URL":"https:\/\/doi.org\/10.1093\/rap\/rkab058","relation":{},"ISSN":["2514-1775"],"issn-type":[{"type":"electronic","value":"2514-1775"}],"subject":[],"published-other":{"date-parts":[[2021]]},"published":{"date-parts":[[2021]]},"article-number":"rkab058"}}