Juvenile Idiopathic Arthritis Week: Insightful New Statistics on Treatment Information: Experts urge for shared decision-making as new survey reveals 25% of families are not consulted about treatment options for children with arthritis
Evidence shows that children respond better to treatment when the decision-making process is collaborative.i Despite this, a new survey reveals that not all families are informed about treatment options for children with arthritis.ii
The survey, commissioned by the National Rheumatoid Arthritis Society (NRAS), highlights that 39% of parents and carers of children with juvenile idiopathic arthritis (JIA) don’t receive sufficient treatment information, and alarmingly, 25% don’t receive any treatment information in their initial consultation. In addition, 26% feel that they have little to no influence on their treatment choices.iii
JIA is one of the most common causes of physical disability in childhood.iv Inflammatory arthritis in children under the age of 16 can cause persistent joint pain, swelling and stiffness.v Approximately 12,000 children in the UK have JIA, which represents 1 child in every 1000 under the age of 16.vi New data from the survey suggest that the disease negatively affects the quality of life of up to 89% of those asked, with mobility and mental health being particularly affected.vii
The increase in therapeutic options for JIA has added complexity to treatment decisions; therefore, shared decision-making is important to help providers and families work together to choose the options most suited to a child’s specific needs and desires.
Dr Alastair Dickson, GP and health economist with an interest in Rheumatology highlights the importance of parents and children with JIA being actively involved in the decision-making process, “Disease severity, side effects or personal preference can all affect how a patient responds to treatment. So, I’d encourage families to ask lots of questions during their consultation; as being involved and helping making decisions to individualise your treatment can make you feel empowered and improve your compliance with the treatment. For example, if you know your child doesn’t like taking pills, then enquire if alternatives are available, such as injectable options, which may only have to be administered weekly.”
Shared decision-making has been shown to improve compliance to treatment, ensuring the best possible clinical outcomes and improved quality of life for the child. Feeling involved in the treatment decision-making process and being aware of all treatment options result in better treatment adherence and improved symptom relief.viii
Clare Jacklin, CEO of NRAS adds; “The most important thing to remember is that with the right support of a team of experts, your child will be more able to join in the same activities etc as their friends are able to do. Shared decision-making regarding treatment options gives the best long-term outlook for children and young people with JIA. We want families to feel empowered to share decision making with their practitioner and to use the ASK approach in consultations. The NRAS team and resources are here to help on every step of yours or your child’s JIA journey. Being fully informed of all the options around medications is important and the JIA Medicines booklet freely available from NRAS will certainly help. Medicines in Juvenile Idiopathic Arthritis – JIA.”
For more information on JIA, support services and resources, visit JIA-at-NRAS (https://jia.org.uk/).
JIA Awareness Week 13-17 June 2022. This year, NRAS are focusing on the fact that JIA is a fluctuating condition and that no 2 days are the same. Get involved in JIA Awareness Week 2022 #SameJIADifferentDay
What is JIA? JIA encompasses all inflammatory arthritis conditions affecting children and can be associated with long-term damage to the joints and other organs, with effects including impacts on sight.
The JIA patient experience survey was carried out in March 2021 by the NRAS with an educational grant by medac Pharma (survey launch date June 2022). A total of 172 UK-based patients who had been diagnosed with JIA within the last 8 years took part. Full results are available to view here