Childhood arthritis - looking to the future
Published on 01 January 2010
One of the first things parents want to know when their child is diagnosed with arthritis is – what will the future hold? New Arthritis Research UK research may help to predict the course of the disease.
For little Grace Bolton, diagnosed with childhood arthritis at the age of just two-and-a-half, the future is uncertain.
Her parents, Gary and Kathryn, know that their four-year-old daughter will probably never be as fit, strong and active as her three other siblings. But what they don’t know is whether Grace’s condition will continue to dominate her life as she grows into adolescence and adulthood, or whether her arthritis symptoms will fade away, or even go into remission.
Like any parents of youngsters with arthritis, Gary and Kathryn, from Belfast, are taking each day as it comes. After the six month gap between Grace developing symptoms – a limp, swollen knees and ankles – and the shock of the diagnosis, they are happy that their little girl is receiving the best possible care from their local paediatric rheumatology team at Musgrave Park Hospital.
And despite the fact that Grace has less stamina than her contemporaries and that her younger sister has already outgrown her, she is a lively, happy child who copes well with her regular injections and drug treatments, and is already ruling the roost at her new nursery school.
But for Grace, her parents, and the thousands of families affected by juvenile idiopathic arthritis (JIA), being able to predict the future severity of disease at the time of diagnosis would be a huge boon.
For one thing, it would mean that youngsters with less severe arthritis would not be put on powerful drugs unnecessarily. But it would also ensure that the worst affected children received the treatment they needed before the disease spread and their joints were irreversibly damaged. In other words, treatment could be tailored to the child, so that they were given effective, appropriate treatment.
Doctors would also be able to reassure parents at the time of diagnosis what the future holds; something they cannot currently do.
Now the doctor treating Grace at Musgrave Park Hospital, Dr Madeleine Rooney and her academic team at Queen’s University believe they may have found a new way of predicting the outcome of disease, by developing a new blood test. With funding of £282,175 over three years from Arthritis Research UK they plan to involve up to 80 local youngsters from Northern Ireland in their important project, as well as similar number of children from the USA.
JIA is an inflammatory form of arthritis affecting one in a thousand children and teenagers, between the ages of six months and 17 years.
But while some youngsters can develop the condition severely, suffering from many painful joints, stiffness and tiredness, in others the condition is not so serious, with only one or two joints affected. Sometimes the child can even “grow out” of their condition.
And currently, at the time a child is diagnosed with arthritis, there are no methods available to predict which children will develop significant, irreversible, joint destruction.
“In a pilot study we identified a number of proteins in the body fluids of children measured at the beginning of the disease that can correctly predict disease outcome at two years,” says Dr Rooney.
"We will be able to start better treatment earlier"
“The purpose of our study is to confirm these findings in a large group of children in Northern Ireland and also in a group of children from the USA. This will ensure that the results are meaningful in different countries. If we confirm our findings we will be able to start better treatments earlier.”
The team will look to see whether these proteins are present in the joint tissue, which they believe is an important site where inflammation begins. They will also examine the blood of affected youngsters. If they can find these proteins in the blood they can develop a simple blood test to predict the outcome of arthritis.
Adds Dr Rooney: “Not knowing how the disease will progress leads to uncertainty, which is very distressing for children and families who have to wait, perhaps for years, to see how their arthritis develops. It is also very difficult for doctors who have to wait before they can start the most effective treatment. At the same time it would be wrong to treat all children with powerful treatments if their disease would not need it in the future.
"Our study could minimise the stress on families, and cut the costs to the NHS by reducing visits to specialists and stays in hospital.”
Grace Bolton’s childhood arthritis is so far taking a typical trajectory. Once the disease started to kick in and spread to more joints, for a time she was unable to walk because of the swelling to her knees, feet and ankles. A steroid injection helped to quickly reduce the inflammation, but when a second injection failed to have much effect, she was then put on methotrexate, which has led to her symptoms improving.
“Grace is the star of the family; she has a very strong personality, copes very well with her condition, and with the injections and blood tests,” says her father. “She can do most things that other kids do, just at a slower pace and for a shorter period of time, so she is usually the first one in when they’ve been playing out on their bikes, for example. She does get tired and she has her good days and bad days.
“I’d welcome anything that would help us to know how Grace’s arthritis will pan out,” adds Gary Bolton. “We’ve been given the impression that she will have this for the long term, at least until she is a teenager, but no-one knows for sure. After we recovered from the initial shock of knowing that our daughter had arthritis, we have just got on with things, and if we can get Grace living a pretty normal life, that’s as much as we can hope for.”
Arthritis Research UK is currently funding two related studies from which it is hoped to be able to devise a ‘predictor kit’ available to all patients and clinicians: Dr Madeleine’s Rooney’s work at Queen’s University, Belfast, and research by Dr Lucy Wedderburn at the Institute for Child Heath at University College London.
The underlying premise of both projects is to discover and validate some markers in the blood of synovial fluid of children with newly diagnosed JIA, that will help clinicians to predict which course the disease might take so that appropriate treatments can be started – or not started.
However, there are differences. Dr Wedderburn is looking to find differences between only two subtypes of JIA; mild disease affecting a few joints and mild disease that in time spreads to become more severe and involving more joints. Dr Rooney is comparing all subtypes of the disease.
While Dr Wedderburn is looking at a wide range of markers – immunological and genetic, Dr Rooney is concentrating on proteins, in particular those identified in a previous pilot study.
Finally, while Dr Rooney is restricting her research to finding predictive markers, Dr Wedderburn is also hoping to understand more about the causes and development of the different types of JIA.