The Pharmacy Practice Research Trust (PPRT) has commissioned a study to explore the perspectives of young people with arthritis about their health and care and the place of medicines and pharmacy.
The project will:
- investigate the relationship between identity and medication use amongst adolescents with juvenile arthritis
- scope patterns of care among young people with juvenile arthritis and map the current contribution of pharmacy and medicines to their treatment
- scope current knowledge and practice amongst pharmacists regarding young people and juvenile arthritis.
The lead investigators are Dr Janet McDonagh, Senior Lecturer in Paediatric and Adolescent Rheumatology at Birmingham Children’s Hospital1, and Dr Nicola Gray, an independent pharmacist researcher.
A cohort of young people will be engaged with the project through a clinical base at Birmingham Children’s Hospital NHS Foundation Trust and through the charity Arthritis Care young people’s discussion forum. To explore young patients’ ideas about their condition, their identity and their medicines, blogging opportunities will be offered through a dedicated project website. In order to understand factors that might affect adherence to medicines for arthritis, the cohort of young people and their parent/caregiver will be encouraged to keep an extended blog diary over a two-month period.
A concurrent work stream will consist of a scoping review of current patterns of care and to map the current contribution of pharmacy and medicines to their treatment.
Says Nicola Gray,
“Adolescents with juvenile arthritis face many challenges; they are building their own identities through their teenage years and the onset of a long term condition during this time may affect this process. Adherence of young people to medication is lower than that of adults. The medication used by young people with arthritis is particularly complex. The side-effects of medicines like methotrexate, which can result in anticipatory and post-administration nausea, pose a challenge to sustained adherence. Support and understanding is needed from pharmacists and prescribers. We hope that this study will consolidate our learning about the perspectives of young people with juvenile arthritis – including issues generic to the care of young people with any long-term condition – and will be useful to policy, practice and education audiences within pharmacy and rheumatology.”
Judith Brodie, CEO of Arthritis Care comments,
“It can be particularly difficult for young people with arthritis, as there is little recognition that arthritis can happen at all ages, and it affects their experience of growing up and being a teenager. So this study is an important step to greater understanding and support for young people with arthritis”.
Beth Allen, PPRT Director comments,
“This study provides an opportunity to explore a range of opportunities and challenges for pharmacists regarding the provision of services to young people, particularly those with juvenile arthritis, which could potentially lead to providing future pharmacy services that are more targeted in their approach. In furtherance of the Trust’s aims to disseminate our funded research, we hope to arrange a stakeholder workshop next year to share the findings of this study to a wider audience of pharmacy and rheumatology services. ”
During the final stages of this project, a funding bid will be submitted to extend the study by developing and modelling interventions to inform the development of existing and / or new models of care.