An innovative research project exploring the relationship between identity and medication use amongst adolescents with arthritis has been published by Pharmacy Research UK. The ‘Arthriting’ project explored young people’s own views on how arthritis medication use impacts on their self-image and engagement with peers. The role of pharmacy in delivering services to young people with arthritis was also examined.
Dr Nicola Gray – independent pharmacist researcher and co-lead of the project, underlined its timeliness and importance
“Pharmacy needs to develop its vision for the care of young people with long-term conditions across hospital and community practice. If we make an investment now to support young people and their families, we will secure better health outcomes for their adulthood. Pharmacists are where young people live, shop and work – available without appointment or stigma. We need to make sure that they can access medicine-related services, just as their access to pharmacy sexual health services has developed over the last decade.”
During the project, young people (aged 11-15) with arthritis – and some of their parents – from the rheumatology clinics at Birmingham Children’s Hospital NHS Foundation Trust (BCH) wrote blogs on the ‘Arthriting’ website, a website specifically created for the project under the guidance of the young people. These individual blogs included their thoughts about identity, the arthritis condition, medication and the use of health services. Young people and parents also had the chance to complete a survey about medication tasks and information-seeking. A case note review of 150 rheumatology clinic patients at BCH. Observation of the Young People’s Discussion Forum on the Arthritis Care website (who collaborated in developing & undertaking this project), added complementary data.
As part of the project, a workshop, attended by young people with arthritis, pharmacy professionals and rheumatology professionals was held. During the workshop the young people created a film which is a series of sketches and interviews with adult professionals. This film accompanies the reports from the project, which are available to view here.
Within the blogs, key comments about identity included a largely positive self-image, and determination to achieve their goals, whilst realising that there were some limits to their physical and emotional endurance that manifested themselves at school and in social activities. They strove for ‘normality’ like any other young person and their medication use – the benefits, routine and side-effects – could both help or hinder the young person in this. In order to maintain a similar identity to their peers, some young people chose to hide their condition from others and choices about disclosure were complex.
Of the 150 cases reviewed, 128 young people were using at least one medication. Those used most commonly were non-steroidal anti-inflammatory drugs (NSAIDs), followed by oral or subcutaneous methotrexate, and a similar number receiving the injectable biologic therapy etanercept. In none of their case notes was a local community pharmacist identified for ongoing care, and half of them were registered with Healthcare at Home. No specific pharmacy issues were identified in the case notes, other than routine funding requests for subcutaneous and/or biologic therapies.
Dr Janet McDonagh – Senior Lecturer in Paediatric and Adolescent Rheumatology at the University of Birmingham, and co-lead of this study with Dr Gray, said
“In juvenile arthritis, the therapies can be complex and teamworking with other professionals is needed to provide the best care for young people. Pharmacists were not generally recognised as a part of the care team by young people and parents. There are opportunities to get more involved, and some innovative UK practice is now being seen, but the pharmacist will need to demonstrate their value.”
This research highlights the central role social context plays in young people’s decisions regarding medication use. In order to ensure young people get the best from their medication, for both present and future benefits, the report recommends that:
- Pharmacists must consider the developmental and psychosocial factors that influence medicine-taking in adolescence, and be flexible about their approach to information-giving and adherence monitoring;
- Medicines Use Review, the New Medicines Service, and the Chronic Medication Service, should be employed to supply, and annually revisit, age- and developmentally-appropriate information for young people and families. These processes must be linked in with members of the rheumatology multi-disciplinary team and other agencies;
- These activities must be underpinned by a research-informed training and education strategy that explores and develops pharmacists’ confidence and competence to engage with young people and families.
Notes for Editors:
- ‘Arthriting’ was the name of the project suggested by the young people’s advisory group.
- Pharmacy Research UK funded a 12-month project involving researchers in pharmacy, psychology, rheumatology and sociolinguistics from the Universities of Birmingham, Bolton, Nottingham and UCL.
- The young people were supported to make the film by Lindsay Starbuck, participation worker at the Association for Young People’s Health.
- Pharmacy Research UK is the principal research charity supporting pharmacists and pharmacy to improve healthcare for the benefit of patients and the public.
- Arthritis Care is the UK’s largest charity working with and for all people who have arthritis.