Juvenile idiopathic arthritis (JIA) affects an estimated 48 out of every 100,000 children in India, with a slightly higher prevalence observed in boys. Hospital-based studies from northern India suggest that Enthesitis-related arthritis (ERA) and polyarticular JIA are the most frequently reported subtypes. However, comprehensive epidemiological data on JIA across the country remains limited. Diagnosis largely depends on clinical evaluation, as there are no definitive diagnostic tests available, according to Indian Pediatrics.
In this exclusive interview, Dr. Anju Singh, Consultant – Pediatric Rheumatology at Artemis Hospitals, explains why delayed diagnosis is common, how children are sometimes wrongly treated with adult protocols, and what India urgently needs to fix the pediatric rheumatology care gap—from medical training reforms to dedicated hospital units.
How many children in India are suffering from juvenile arthritis and how many go undiagnosed?
Juvenile idiopathic arthritis, the most common type of arthritis in kids, affects about 1 to 2 out of every 1,000 children in India. This means that a lot of Indian children may have this condition. Many people don’t get diagnosed or have to wait a long time for a diagnosis, especially in rural or underserved areas, because they don’t know about it or don’t have easy access to pediatric rheumatology care. People often miss or misattribute early signs like joint pain and swelling. The result is a substantial hidden burden of disease, many children suffer disability, growth issues, and joint damage before proper treatment begins.
What are the symptoms parents should not ignore when it comes to joint pain in children?
If a child has joint pain that doesn’t go away, especially after resting, and one or more joints are swollen, warm, or stiff, they may need to see a doctor. It’s not good if you have trouble walking, moving around, or feeling stiff in the morning for more than a week. Some children may also be tired, have a high-grade fever, have a rash, or not want to eat. Certain types, like systemic JIA, can make you have a fever, a rash, or swollen glands.
How serious is the risk of permanent disability if the condition is not treated early?
If juvenile idiopathic arthritis isn’t treated right away, the chance of permanent disability is very high. Delayed diagnosis, which usually takes about 10 months from the first symptoms, can cause chronic pain, permanent joint damage, limited mobility, growth problems, and even blindness if the eyes are affected. Research involving children indicates that 49 per centexperience articular damage, while approximately 22 per centsustain injuries to the eyes or other organs, particularly in cases of delayed treatment or more severe subtypes. Long term follow ups show that about 30 per centof adults with JIA that started in childhood have moderate to severe functional disability.
Is India’s medical education system failing to train enough paediatric rheumatologists?
India’s medical education system is slowly adding more training for pediatric rheumatologists, but it still isn’t adequate. There are more than 1.3 million kids with juvenile idiopathic arthritis, but only a few centers can diagnose them early, and fewer than 50 per centof cases are diagnosed early because there aren’t enough specialists. Most trainees say they don’t feel confident handling pediatric cases. Even though there are workshops, fellowships, outreach, and professional societies working to make training and awareness more widespread, it is still a big problem.
What are the main challenges in building specialist paediatric rheumatology departments in major hospitals?
There are a number of big problems that need to be solved before major Indian hospitals can build specialised pediatric rheumatology departments. There aren’t many trained specialists, which makes it hard to find and mentor new ones. Medical schools don’t teach pediatric rheumatology or musculoskeletal exams in a way that makes general pediatricians feel ready. The establishment of multidisciplinary teams with physiotherapists, occupational therapists, specialist nurses, and diagnostic support is a hard task because of financial and resource issues. Society and physicians are still largely unaware of these diseases, leading to late referrals to, or an inadequate demand for, specialist services.
Why is awareness about juvenile arthritis so low even among general physicians and paediatricians?
Awareness of juvenile arthritis is still low in India, even among general doctors and pediatricians, because they didn’t learn much about it during their training. Undergraduate and postgraduate medical curricula provide limited instruction in rheumatology, frequently prioritizing rare disorders over prevalent musculoskeletal conditions, and rarely include training in joint examination techniques. Surveys indicate that most Indian physicians express limited proficiency in diagnosing or managing rheumatic conditions. This lack of training, along with the perception that pediatric rheumatologists are rare and the fact that there aren’t many of them, makes it harder to recognize and refer patients.
What support systems exist for families managing a child’s long-term rheumatologic care and are they enough?
Families who have a child with a long-term rheumatologic condition like juvenile arthritis often get help from doctors, informal support groups, and online resources. Some hospitals offer counseling, physiotherapy, and follow up care, but these services aren’t always available in every area. There are support systems, but they are often broken and not enough to meet the needs of families with children who have long term health problems.
Are children being wrongly treated with adult protocols due to lack of specialist care?
Due to the shortage of pediatric rheumatology specialists in many locations, many children with juvenile arthritis can sometimes be treated following the adult models. Adult guidelines could be prescribing higher doses of medications, monitoring for growth differently, or recommending treatments that have not been studied in children. This can lead to overtreatment, associated side effects, and adverse events. To avoid long-term harm, each pediatric case will require individualized care through specific dosing, growth monitoring, and considerations unique to each subtype. Proper and safe treatment for children necessitates that the treatment be child specific.
What policy or institutional changes could solve the shortage of paediatric rheumatologists across India?
To address the lack of pediatric rheumatologists in India, it is imperative to establish additional training programs and fellowships within medical colleges. There should be separate pediatric rheumatology units in hospitals. Medical students and general pediatricians should have the right amount of experience with childhood joint diseases. More doctors can be encouraged to specialize in this important field if people know more about it, are educated about it, and the government helps.