BIRMINGHAM, ENGLAND — Young people and children with juvenile idiopathic arthritis need better and faster access to arthritis care services, according to the first standards-of-care document to be issued for the condition in the United Kingdom.
“Standards of Care for Children and Young People With Juvenile Idiopathic Arthritis,” developed by the U.K.-based Arthritis and Musculoskeletal Alliance (ARMA), was made public for the first time at the meeting.
Central to the standards is the need for a holistic treatment approach: not only managing disease activity, but also considering the impact that arthritis has on young patients' overall health, mental well-being, educational and employment prospects, and social integration.
“Rarely a day has gone by when I haven't been frustrated by the lack of service that I feel able to provide, and the knowledge that with the appropriate resources I could provide a much better experience for these young people,” said Dr. Karen Davies, a consultant pediatric rheumatologist at New Cross Hospital in Wolverhampton, England. “I think these standards of care are very timely.”
The document consists of 44 statements that are aimed at improving the care of young people with juvenile idiopathic arthritis (JIA). The first—and perhaps most important—standard states that all health care professionals who are likely to come into contact with a young person with JIA should have the necessary skills to recognize the condition.
“I was diagnosed with juvenile idiopathic arthritis in 1993, or JCA [juvenile chronic arthritis] as it was called then, when I was 11,” said Sally Watt, who was involved in developing the standards.
Despite having repeated fractures from about the age of 5 years, Ms. Watt said it took several years for her condition to be recognized as JIA. She repeatedly heard from primary care physicians that “kids don't get arthritis,” and “you're too young for arthritis.” She started to receive expert care only when her family eventually paid to see a rheumatologist.
“As I have got older, it has become very apparent that my life is very different” from that of friends, Ms. Watt said. Now 28 years old, she commented that one of the main problems she had with the health care system was obtaining information and getting access to available support services, which the standards of care also address.
“The aim of the standards-of-care document is to try to break down the barriers to prompt diagnosis,” said Dr. Penny Davis, cochair of the group that developed the recommendations.
Dr. Davis, a consultant pediatric rheumatologist at Birmingham (England) Children's Hospital, added that the standards also aimed “to ensure equitable access to holistic and multidisciplinary care, and to ensure that every child and young person has the most appropriate treatment.”
Ros Meek, director of ARMA, commented that “there's clearly an immense amount of work needed to take these standards of care forward. Their dissemination and implementation are what is going to make all the difference.”
Disclosures: Dr. Davies and Dr. Davis had no conflicts of interest. The standards of care project was managed by the Arthritis and Musculoskeletal Alliance, working with the British Society of Paediatric Rheumatology. The project received funding from an anonymous donor and an unrestricted educational grant from Wyeth Pharmaceuticals, a wholly owned subsidiary of Pfizer Inc.