Exploring the clinical profiles and management of juvenile dermatomyositis in Africa: a survey of African rheumatology care providers
Authors' conclusion
Respondents identified 216 children with JDM seen within the last 10 years, exceeding the 196 children with JDM reported within the last 25 years but likely still underestimating prevalence. Our findings align with reports of severe manifestations and poor outcomes in African children with JDM. Access to many diagnostics and medications is limited, and differences in accessibility parallel regional healthcare disparities.
Study context
- Population
- Members of African League of Associations for Rheumatology (AFLAR) and PAFLAR (African rheumatology care providers), November 2022-January 202343 started
- Participants
- 363 members
- Outcome
- Burden of JDM and access to diagnostics and therapy in Africa
Methodological detailssurvey, distributed via WhatsApp, English and French, Forty-three (12%) providers started the survey; 37 (86%) consented and manage juvenile dermatomyositis (JDM); 4 (11%) partially and 16 (43%) fully completed, Most respondents adult and/or pediatric rheumatologists (n = 19; 95%); all 5 African regions represented
- Survey
- Distributed via WhatsApp
- English and French
- Forty-three (12%) providers started the survey; 37 (86%) consented and manage JDM; 4 (11%) partially and 16 (43%) fully completed
- Most respondents adult and/or pediatric rheumatologists (n = 19; 95%); all 5 African regions represented
Main finding
As reported in the abstract
- Children with JDM described within the last 10 years
- 216
- Prevalence of calcinosis (as high as)
- 100%
- Prevalence of interstitial lung disease (ILD) (as high as)
- 32%
- Mortality in Kenya
- 6/42; 14%
- Mortality in Zambia
- 2/7; 29%
- Diagnostic tools and medications accessible to ≤ 50% of respondents after considering cost
- Thirteen of 27
- Of these, mostly in Northern or Southern Africa
- 9/13; 69%
Observational data: associations, not effects.
Original publication
Exploring the clinical profiles and management of juvenile dermatomyositis in Africa: a survey of African rheumatology care providers. Pediatr Rheumatol Online J. Published 27 January 2025. doi:10.
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