Development of the paediatric society of the African league against rheumatism (PAFLAR) JIA registry and clinical profile of JIA in Africa from the PAFLAR JIA registry.

Autor: Migowa AN; Department of Paediatrics, Aga Khan University Medical College East Africa Nairobi, P.O Box 30270, Nairobi, 00100, Kenya. angela.migowa@aku.edu., Hamdi W; Department of Rheumatology, Kassab Institute - Tunis El Manar University - Faculty of Medicine of Tunis, Tunis, Tunisia., Hashad S; Tripoli Children's Hospital, University of Tripoli, Tripoli, Libya., Etayari H; Tripoli Children's Hospital, University of Tripoli, Tripoli, Libya., Abushhaiwia A; Tripoli Children's Hospital, University of Tripoli, Tripoli, Libya., Ferjani H; Rheumatology Department, Kassab Institute of Orthopedics, Faculty of Medicine of Tunis, Tunis, Tunisia., Nessib DB; Department of Rheumatology, Kassab Institute - Tunis El Manar University - Faculty of Medicine of Tunis, Tunis, Tunisia., Kharrat L; Department of Rheumatology, Kassab Institute - Tunis El Manar University - Faculty of Medicine of Tunis, Tunis, Tunisia., Fazaa A; Department of Rheumatology, Mongi Slim Hospital - Tunis El Manar University - Faculty of Medicine of Tunis, Tunis, Tunisia., Owino L; Department of Paediatrics, Faculty of Health Sciences Nairobi, University of Nairobi, Nairobi, Kenya., Faleye A; Department of Paediatrics, Lagos State University Teaching Hospital Lagos, Lagos, Nigeria., Owusu SA; Department of Paediatrics and Child Health, University for Development Studies, Tamale, Ghana., Mosa DM; Department of Rheumatology and Rehabilitation, Faculty of Medicine, Mansoura University Hospital, Mansoura, Egypt., Eissa M; Department of Rheumatology, Cairo University, Cairo, Egypt., Nasef SI; Rheumatology Department, Suez Canal University, Ismailia, Egypt., Elsehrawy GG; Rheumatology Department, Suez Canal University, Ismailia, Egypt., Odhiambo R; Research Unit, Aga Khan University Medical College East Africa Nairobi, Nairobi, Kenya., Orwa J; Department of Population Health, Aga Khan University Medical College East Africa Nairobi, Nairobi, Kenya., Abu-Zaid MH; Faculty of medicine Tanta, Tanta University, Tanta, Egypt.
Jazyk: angličtina
Zdroj: Pediatric rheumatology online journal [Pediatr Rheumatol Online J] 2024 Jul 22; Vol. 22 (1), pp. 67. Date of Electronic Publication: 2024 Jul 22.
DOI: 10.1186/s12969-024-01000-3
Abstrakt: Background: The spectrum of Juvenile Idiopathic Arthritis (JIA) in Africa is still largely unknown. We thus set out to illustrate how we set up the PAFLAR JIA registry and describe the clinical profile of Juvenile Idiopathic Arthritis across various regions in Africa.
Methods: We carried out a retrospective observational cohort study where collaborators were trained on use of the existing PAFLAR REDCAP database to enter data for the JIA patients currently under their care capturing their epidemiological data, clinical features, laboratory investigations, diagnosis and therapy at initial diagnosis. Descriptive statistics including means, standard deviations, medians, interquartile ranges (IQR) for continuous variables and proportions for categorical variables were calculated as appropriate. Tests for difference between groups were performed between categorical variables using Pearson's chi-square or Fisher's exact tests. All analyses were performed using SPSS version 22 software.
Results: We enrolled 302 patients, 58.6% (177 of 302) of whom were female. The median age of disease onset was 7 years (range 3-11 years) and the median age at diagnosis was 8.5 years (range 5-12 years). The median duration delay in diagnosis was 6 months (range 1-20.8 months). The JIA categories included Systemic JIA 18.9% (57), Oligoarticular JIA 19.2% (83), Polyarticular RF + ve 5% (15), Polyarticular RF-ve 17.9% (54), Enthesitis Related Arthritis (ERA) 18.2% (55), Psoriatic Arthritis 7% (21) and undifferentiated JIA 5.6% (17). As regards treatment the commonest therapies were NSAID therapy at 31.1%, synthetic DMARDs at 18.1%, synthetic DMARDs combined with NSAIDs at 17.5% and steroid therapy at 9.6%. Biological DMARDs accounted for 2.3% of therapies offered to our patients at diagnosis. The average JADAS score was 10.3 (range 4.8-18.2) and the average CHAQ score was 1.3 (range 0.7-2.0).
Conclusion: Our study highlights strategies involved in setting up a Pan-African paediatric rheumatology registry that embraces our broad diversity and the vast spectrum of JIA in Africa while comparing the various therapies available to our patients. The PAFLAR JIA registry strives to ensure a comprehensive representation of the diverse healthcare landscapes within the continent. Further longitudinal observation studies are required to ascertain the long-term outcomes of our patients and ultimately help inform policy to create a more favorable health ecosystem to support the healthcare needs of JIA patients in Africa.
(© 2024. The Author(s).)
Databáze: MEDLINE
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