Evidence map›Paper›PMID 39871317›Full record

ArticlePediatric rheumatology online journal2025

Exploring the clinical profiles and management of juvenile dermatomyositis in Africa: a survey of African rheumatology care providers.

Jessica Perfetto, Laura B Lewandowski, Dawn M Wahezi, Vanessa Ogega, Joan Ahimbisibwe, Kate Webb, Christiaan Scott, Angela Migowa

Abstract read
In one paragraph

Article in Pediatric rheumatology online journal, 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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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

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

8 authors.

Jessica PerfettoHassenfeld Children's Hospital at NYU Langone, New York, NY, USA. jessica.perfetto@nyulangone.org.ORCID http://orcid.org/0000-0001-8244-7348
Laura B LewandowskiLupus Genomics and Global Health Disparities Unit, Systemic Autoimmunity Branch, National Institute of Arthritis and Musculoskeletal and Skin Diseases, NIH, Bethesda, MD, USA.
Dawn M WaheziThe Children's Hospital at Montefiore, Bronx, NY, USA.
Vanessa OgegaAga Khan University Medical College East Africa, Nairobi, Kenya.
Joan AhimbisibweAga Khan University Medical College East Africa, Nairobi, Kenya.
Kate WebbRed Cross War Memorial Children's Hospital, Cape Town, South Africa.
Christiaan ScottChildren's Hospital of Eastern Ontario, Ottawa, ON, Canada.
Angela MigowaAga Khan University Medical College East Africa, Nairobi, Kenya.

Funding

NIAMS IRP NIAMS IRPThe Children's Hospital at Montefiore The Children's Hospital at Montefiore
6 · The paper itself

Abstract

backgroundThere are limited studies of juvenile dermatomyositis (JDM) in low and middle-income countries (LMIC). Many demonstrate delays to care, high prevalence of severe manifestations, and high mortality. Given the disease-associated damage with JDM, understanding JDM in Africa further is critical. Our objectives are to understand the burden of JDM in Africa and provider access to diagnostic tools and therapy through survey methodology.

methodsA survey (available in English and French) was distributed via WhatsApp to 363 total members of the African League of Associations for Rheumatology (AFLAR; n = 233) and Paediatric Society of the African League Against Rheumatism (PAFLAR; n = 130) from November 2022-January 2023. Topics included respondent specialty, number of JDM patients followed, severe manifestations, and available diagnostic tools and medications (with and without considering cost).

resultsForty-three (12%) of the 363 providers who received the survey started it. Among the 43 who started the survey, 37 (86%) provided consent and manage JDM patients; of these 37 providers, 4 (11%) partially and 16 (43%) fully completed the survey. Most were adult and/or pediatric rheumatologists (n = 19; 95%). Respondents represented all 5 African regions and described 216 children with JDM within the last 10 years. There was high prevalence of calcinosis (as high as 100%) and interstitial lung disease (ILD) (as high as 32%); mortality rates in Kenya (6/42; 14%) and Zambia (2/7; 29%) exceeded the 1-3% mortality reported in studies of high-income countries. Thirteen of 27 diagnostic tools and medications were accessible to ≤ 50% of respondents after considering cost, mostly in Northern or Southern Africa (9/13; 69%). Despite being cost-free, disease assessment tools and physical exam to assess calcinosis were not reported as universally available or accessible.

conclusionsThis is the first study to explore experiences of providers caring for children with JDM in Africa. 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. The potential differences in JDM severity warrant systematic study and highlight the need to include patients and providers from LMIC in collaborative research efforts.

Indexed as

DermatomyositisRheumatologyAfricaChildFemaleHealth Services AccessibilityHumansMaleRheumatologistsSurveys and QuestionnairesAfricaCalcinosisInterstitial lung diseaseJuvenile dermatomyositisLow and middle-income countries

Identifiers

PMID39871317
PMCPMC11771122

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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.