The COVID-19 Pandemic Highlights An Unmet Need To Improve Remote Assessment of Disease Activity in Rare Diseases, Juvenile-Onset Systemic Lupus Erythematosus And Juvenile Dermatomyositis
Abstract Here we report the results of a pilot young patient survey which targeted patients with juvenile systemic lupus erythematosus (JSLE) and juvenile dermatomyositis (JDM), which explored wellbeing, resilience and general concern about the COVID-19 pandemic. The survey was completed anonymously by patients who have been approached via the automatically generated hospital data base between June-December 2020. This pilot study found that generalised concerns regarding the COVID-19 pandemic were significantly higher in females, although their self-reported disease activity scores were comparable with male respondents. Our findings highlight a need to improve remote assessments to facilitate triaging for face-to-face visits in the situation of future pandemics associated with disruption of clinical services, as well as further research in this area of young patient-reported outcomes outside hospital visits..
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Preprint| Erscheinungsjahr: |
2021 |
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| Erschienen: |
2021 |
| Enthalten in: |
ResearchSquare.com - (2021) vom: 29. Nov. Zur Gesamtaufnahme - year:2021 |
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| Sprache: |
Englisch |
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| Beteiligte Personen: |
Peng, Junjie [VerfasserIn] |
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| Links: |
Volltext [kostenfrei] |
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| doi: |
10.21203/rs.3.rs-1021418/v1 |
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| 520 | |a Abstract Here we report the results of a pilot young patient survey which targeted patients with juvenile systemic lupus erythematosus (JSLE) and juvenile dermatomyositis (JDM), which explored wellbeing, resilience and general concern about the COVID-19 pandemic. The survey was completed anonymously by patients who have been approached via the automatically generated hospital data base between June-December 2020. This pilot study found that generalised concerns regarding the COVID-19 pandemic were significantly higher in females, although their self-reported disease activity scores were comparable with male respondents. Our findings highlight a need to improve remote assessments to facilitate triaging for face-to-face visits in the situation of future pandemics associated with disruption of clinical services, as well as further research in this area of young patient-reported outcomes outside hospital visits. | ||
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| 700 | 1 | |a Khatun, Ayesha |e verfasserin |4 aut | |
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