'India Lacks Multidisciplinary Approach For Juvenile Rheumatoid Arthritis Patients’

It is said that 60 out of 1,00,000 children in the US and the UK are affected with juvenile rheumatoid arthritis. With as many as 12,000 children in Mumbai estimated with paediatric rheumatoid arthritis, the formation of Juvenile Arthritis Support group at Mumbai's Jaslok Hospital signifies an important milestone. And that is why Canada-based Dr Ross Petty, Head of the Division of Rheumatology in the Department of Pediatrics at BC's Children's Hospital and the University of British Columbia, was at Jaslok Hospital, invited by Dr Raju Khubchandani, a pediatrician with special interest in Paediatric Rheumatology. Dr Petty is credited with theestablishment of The Arthritis Society, the first comprehensive programme in paediatric rheumatology in Canada. He is the recipient of the Ross Award, a prestigious honour given by the Canadian Paediatric Society for contribution to the care of children and youth. Both the rheumatologists spoke to Rita Dutta about various aspects of the disease.

Dr Ross Petty	Dr Raju Khubchandani

Please brief me about the Juvenile Arthritis Support group started at Jaslok Hospital.

Dr Khubchandani: Jaslok hospital was the first to launch paediatric rheumatology services in the city of Mumbai, three years ago. Besides patient care, the department has done its bit in spreading awareness about children with joint diseases amongst patients, parents and physicians. In the last few years, we realised that joint/muscle and connective tissue diseases in children can devastate families and that such families are often in need of educational inputs, emotional support and empowerment to cope. So while 'juvenile arthritis' refers to a specific disease entity, the scope of JAS would be to provide such inputs to families and kids with joint, muscle and connective tissue diseases in general. It is important to note that JAS is not a facility, which provides financial aid or arranges subsidised care.

Which other Indian hospitals have such support groups for juvenile arthritis? Do most hospitals in the western countries have such support groups?

Dr Petty: This is the first one I know of. Many Western countries do have active support groups for various chronic illnesses. Arthritis support groups in the UK and Europe are very active and function independent of hospitals as voluntary organisations.

What are the most prevalent forms of juvenile arthritis? What is the incidence of its various forms?

Dr Petty: Many childhood illnesses, like systemic lupus erythematosus, dermatomyositis, leukemia, and infections, can cause symptoms of arthritis. It is important that these diseases be identified and appropriately treated. If there are 400 million children in India, it is likely that one-quarter of of million children have some kind of arthritis. This represents an enormous disease burden, well beyond the capacity of the current number of rheumatologists and paediatric rheumatologists to care for optimally. I understand from colleagues in India, that there is also a very severe shortage of physical therapists, occupational therapists and nurses, who are trained and experienced in helping in the care of children with arthritis.

Dr Khubchandani: There are no incidence or prevalence figures available for India. If one goes by the UK or North American data of a prevalence of 60 per 1,00,000 children and assumes a 20 million Mumbai population with about 40 per cent as children, an assumed number of 12,000 kids at any point in time in Mumbai would be suffering from juvenile rheumatoid arthritis. Add to this, other diseases like lupus and dermatomyositis Kawasaki disease and many more diseases with joint manifestations and we have a huge burden. One important point to be noted is that with the eradication of polio this group of disorders will emerge as the largest cause of physical handicap.

What are the various forms of juvenile rheumatoid arthritis? What are the symptoms of juvenile rheumatoid arthritis? Can a child affected with juvenile rheumatoid arthritis lead a normal life?

Dr Petty: In general, children with arthritis have pain and swelling in one or more joints. Young children sometimes do not complain of pain, but they may limp, be stiff in the morning, or alter their play patterns. Activities which were formerly easy for the child to perform, become difficult. The symptoms are often most severe in the morning ("morning stiffness"), and may improve with activity. In some children, many joints, including those of the hands, are affected. Such children have severe pain, stiffness and lose range of motion in the affected joints. Any joint, including those of the neck, spine and jaw may be affected.

Children with a particularly severe form of disease (systemic arthritis) have fever, rash, enlarged lymph nodes, spleen, liver, and anemia in addition to arthritis. With the passage of time, if the child is untreated, the joints become chronically swollen, lose range of motion, and eventually may be destroyed. Severity of disease, and its effects on the child depends on at least two factors. First, there are many types of juvenile arthritis, and some types (like polyarthritis: many affected joints, or systemic arthritis) are more severe than other types (like oligoarthritis: few affected joints). The second factor that determines the severity of the effects of the disease on the child is treatment. Children who are untreated, or who are treated late in the course of disease have the worst outcome than those who are treated early. In the hands of a physician, who is expert in the management of children with arthritis, even children with severe forms of the disease can have an excellent outcome.

How does one diagnose juvenile rheumatoid arthritis? Are all the diagnostic methods available in India?

Dr Petty: Juvenile arthritis and various other joint diseases involve clinical or bedside diagnosis. Investigations are often required to access activity, detect complications or monitor therapy. All such modalities should be available at any medium or large hospital in India.

What should be the first line of treatment for juvenile rheumatoid arthritis?

Dr Petty: As of now, there is no cure for childhood arthritis as administration of drugs does not cure the disease. However, medicines available today are very effective at controlling the disease and that may seem like the disease has gone away entirely. Initial treatment usually begins with one group of drugs, called non-steroidal anti-inflammatory drugs (NSAIDs) such as naproxen or ibuprofen.

If these drugs fail to completely control the disease, other medications are used. These depend on the type of disease, its severity, the patient's preferences, and other factors. They include cortisone-like drugs as a pill prednisolone) or injections into the affected joints (triamcinolone hexacetonide). Other important drugs used to control the disease include methotrexate, hydroxychloroquine, sulfasalazine and the new biologic agents such as etanercept and infliximab. With careful use of these drugs, the disease can be controlled in most children, although they usually require medications for many years.

What are the hindrances to the treatment?

Dr Petty: Geographic distance plays an important role, but the most important barrier to care is limited awareness on the part of parents and primary care physicians (general practitioners, paediatricians) about the signs of the disease. Too often, arthritis is thought not to occur in a child, or symptoms are ascribed to other causes (usually trauma). There is still a wide-spread belief that nothing can be done about arthritis. Nothing, could be farther from the truth. The advances made in understanding arthritis in the last decade have revolutionised the outcome for children with these diseases.

What are major breakthroughs in the treatment of juvenile rheumatoid arthritis in the recent past?

Dr Petty: The drug methotrexate, which is very cheap, represents one important breakthrough and recently the biological agents, which are yet very expensive the world over, have changed the complexion of the disease.

Are there enough experts in juvenile rheumatoid arthritis in India and worldwide?

Dr Petty: There is a world wide shortage of paediatric rheumatologists. It is estimated that there are about 700 qualified / trained specialists, of which about 500 would be in North America and Europe. Canada has the largest number when one uses the doctor to population ratio. I learnt from this trip that there are about half a dozen centres in India. The arthritis care model that we have in Canada is centered around the child and family, and includes the expertise of paediatric rheumatologists, physical and occupational therapists, nurses, social workers and nutritionists, all of whom make important contributions to the care of children with arthritis. That model has not yet been developed in India, although there is considerable interest in doing so.

Please tell me about the research chairs constituted on Dr Petty’s name back at Canada.

Dr Petty: With the possibility of finding a cure for arthritis, The Arthritis Society, BC and Yukon Division (TAS) has launched a USD 10.5 million campaign in June 2004 to fund two research chairs in arthritis research. The two research chairs, held at the University of British Columbia will focus on research into paediatric rheumatology, proteomics and genomics to understand the fundamental mechanisms of the disease.