Juvenile arthritis management in less resourced countries (JAMLess): consensus recommendations from the Cradle of Humankind

Abstract

Juvenile idiopathic arthritis (JIA) is the most prevalent chronic rheumatic disease in children and young people (CYP) and a major cause of pain and disability. The vast majority of the world's children and their families live in less resourced countries (LRCs) and face significant socioeconomic and healthcare challenges. Current recommendations for standards of care and treatment for children with JIA do not consider children living in less resourced countries. In order to develop appropriate recommendations for the care of CYP with JIA in less resourced countries a meeting of experienced pediatric rheumatologists from less resourced countries was convened with additional input from a steering group of international pediatric rheumatologists with experience in developing recommendations and standards of care for JIA. Following a needs assessment survey of healthcare workers caring for CYP with JIA in LRC, a literature review was carried out and management recommendations formulated using Delphi technique and a final consensus conference. Responses from the needs assessment were received from 121/483 (25%) practitioners from 25/ 49 (51%) less resourced countries. From these responses, the initial 84 recommendations were refined and expanded through a series of 3 online Delphi rounds. A final list of 90 recommendations was proposed for evaluation. Evidence for each statement was reviewed, graded, and presented to the consensus group. The degree of consensus, level of agreement, and level of evidence for these recommendations are reported. Recommendations arrived at by consensus for CYP with JIA in less resourced countries cover 5 themes: (1) diagnosis, (2) referral and monitoring, (3) education and training, (4) advocacy and networks, and (5) research. Thirty-five statements were drafted. All but one statement achieved 100% consensus. The body of published evidence was small and the quality of evidence available for critical appraisal was low. Our recommendations offer novel insights and present consensus-based strategies for the management of JIA in less resourced countries. The emphasis on communicable and endemic

Factors impacting referral of JIA patients to a tertiary level pediatric rheumatology center in North India: a retrospective cohort study

“…Only 4.8% were in remission whereas the median disease duration was 13.8 months (IQR [3.8, 34.5]) which is not in line with international recommendations advocating clinical remission within 6 months following treatment onset [25]. Facing this common problem of shortage of PRst in low and middle countries, JAMLess recommendations advocate that in the absence of PRsts, patients should be assessed by clinicians knowledgeable and skilled in caring for children with rheumatic disorders who, ideally, are affiliated with an established rheumatology clinical network [19]. However Spencer in a commentary has suggested that in countries where PRsts are not available, the help of other specialists is essential and appreciated but this is a stop-gap solution and development of PR in every country is the only acceptable long term solution [42].…”

“…Training programs in pediatric rheumatology which are now available at a few centers in India including this center are essential to provide good care countrywide and reduce patients's journey [22]. Clinicians caring for patients with JIA should be encouraged to organize and participate in relevant educational activities [19]. As advocated in the SHARE survey, educating primary health care providers settled in areas far away from tertiary centers is definitively crucial for improving early referral and also building clinical networks and shared care to facilitate delivery of care closer to home [39].…”

“…As advocated in the SHARE survey, educating primary health care providers settled in areas far away from tertiary centers is definitively crucial for improving early referral and also building clinical networks and shared care to facilitate delivery of care closer to home [39]. Additionally, the recent JAMless publication [19] has suggested that a mandatory module on PR during the training of all medical doctors who could be involved in the care pathway of JIA patients should be introduced to improve awareness about rheumatological diseases and has pointed out the importance of referring the child early to a PRst [19]. Indeed, studies have shown that pediatricians are not confident about their skills to examine the musculoskeletal system and often do not assess joints as part of routine clinical assessment of their patients [43].…”

“…This can be explained by the high incidence of infectious diseases in India that can present with prolonged pyrexia sometimes associated with articular symptoms or rash. Facing a child with fever and chronic arthritis practitioners consider tuberculosis [47], reactive arthritis (especially post streptococcal or Poncet's disease), HIV or other viral infections prior to sJIA in the differentials [19,48]. A clinical trial with antibiotic therapy against TB and/or streptococcus is frequently started and the child is reassessed after several weeks to months at the end of the antibiotics course which tends to increase the time to referral of sJIA patients to the PRst.…”

“…There are no available epidemiological studies but the estimated number of Indian children with JIA ranges between 350,000 [17] to 1.3 million [18]. Management of these patients in low and middle resource countries is a global concern: recent recommendations about JIA management in less resourced countries (JAMLess) advocate that new patients with suspected JIA should be seen by a PRst within 4 weeks from the time of referral [19]. In India the delay to PR centers is likely to be more than in high income countries [20] because the shortage of pediatric rheumatologists (PRst) is more significant [21] and health-care costs are paid out of pocket by patients [22].…”