New research at Newcastle University suggests that young arthritis sufferers make decisions based on how treatment will affect their appearance, their social life and their physical and mental well-being.
The research, funded by Arthritis Research UK, also suggests that young people are concerned about whether treatments could threaten their day-to-day life.
Inflammatory arthritis, a group of conditions including juvenile idiopathic arthritis, rheumatoid arthritis, ankylosing spondylitis and psoriatic arthritis, can need aggressive treatment including the use of biologic therapies. For young people, making these crucial treatment decisions comes at a difficult time in their personal and disease development. It is vital that the right decision is made because these decisions can have profound consequences.
The research, which included interviews with 25 16-25 year olds with inflammatory arthritis, suggested that young people judge biologic treatments on their potential to help them to lead a normal life. While they understand the potential long-term risks of these therapies, they feel bound to accept these risks in order to improve life for the foreseeable future.
The research also suggests that the emotional, social and vocational consequences of side effects of treatment can be central for young people. Generally, patients value treatments that help them to live a normal life. However perceptions of a ‘normal life’ are different depending on age, condition and their treatment.
The researchers conclude that “young people need support and encouragement to explain how treatment helps or hinders normal life, so regimens can be clarified and/or adjusted in order not to be unnecessarily restrictive.”
Ruth Hart, a researcher at Newcastle University, who is leading the £150,000 research project with Dr Tim Rapley, said: “For many young people with arthritis keeping on top of treatment is a struggle, but if not properly managed the condition itself can have very serious consequences. So helping young people identify the challenges and opportunities of different treatment options is a key step in enabling them to make decisions about treatment that they can see through.”
Chris Deighton, President of the British Society for Rheumatology, said: “People with inflammatory rheumatic diseases need as much information on drug regimens as possible so that they can make informed decisions on the best strategies, weighing up the pros and cons, and short and long term considerations. This applies to all patients, but especially young people with their whole lives in front of them.”
The research “Being as normal as possible: how young people value the risks and benefits of treatment” will be presented at the British Society for Rheumatology’s conference Rheumatology 2014, as a poster abstract. There is more information about the conference at www.rheumatology2014.org
Press release courtesy of Arthritis UK
published on: 19 February 2014