Reducing Treatment Burden in People with Rheumatoid Arthritis
Research type
Research Study
Full title
Keeping Safe and Well: Reducing Treatment Burden in People with Rheumatoid Arthritis
IRAS ID
289961
Contact name
Sarah Ryan
Contact email
Sponsor organisation
Keele University
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
Summary of Research
Rheumatoid arthritis (RA) is the commonest auto-immune inflammatory arthritis, with a UK prevalence of 0.8% (Symmons et al 2002). People with RA have a combination of symptoms including joint pain, joint stiffness, joint swelling and fatigue . If left untreated, joint damage and deformity can occur (Monit et al 2015). The diagnoses of RA is predominantly based on objective signs of joint inflammation and investigation results including raised serum acute phase inflammatory markers (including c-reactive protein), anticyclic citrullinated peptide antibodies (anti-CCP) and ultra sound scan findings (Akil and Moots 2018).The condition can be treated with disease-modifying anti-rheumatic drugs (DMARDs) which are associated with significant threats to patient safety (including hepatotoxicity, leucopoenia and impaired kidney function) and consequently patients require regular safety monitoring, including blood tests to ensure that the medication remains safe to take (Curtis et al 2018). Apart from blood-related side-effects, patients need to be vigilant regarding other potential threats to safety, including breathlessness, skin rashes and gastrointestinal upsets. Patients will vary in their ability to follow the requirements for safety monitoring depending on physical, psychological and social factors, lay beliefs regarding medications, health literacy, resources (such as transport) or readiness to address the demands of treatment (Shippee et al 2012, May et al 2014).
The commencement of DMARDs is initiated by a rheumatologist in a specialist clinic with ongoing safety monitoring undertaken at a hospital based clinic or at the patient’s GP practice. In all instances a shared care agreement is recommended which outlines the responsibilities of secondary and primary care.Summary of Results
People with active rheumatoid arthritis (RA) take medication to dampen down the symptoms of their condition including joint swelling, joint stiffness, pain and fatigue. These medications are known as disease modifying drugs and require regular blood tests to ensure they remain safe to take.
The aim of the study was to explore whether attending for regular blood tests (known as drug monitoring) impacted on the work involved for people with RA and their families.
Sixteen people with RA, attending one of two rheumatology departments in the Midlands, and three family members took part in a telephone interview. The aim of the interviews was to explore experiences of attending for drug monitoring. The interviews took place between July 2021 and January 2022.
Researchers from Keele University carried out the study. The study was funded by the General Nursing Council for England and Wales Trust. The study was sponsored by Keele University.
A patient advisory group of people with RA who attended for drug monitoring met three times during the study. The purpose was to share examples of the work involved with drug monitoring, develop the interview guide and help interpret the results.
A stakeholder group met to discuss the findings. The group consisted of 3 rheumatology nurses, 3 academics, 3 doctors and a person with RA.
Key findings were that:
1) People with RA were happy to attend drug monitoring as they viewed ther medicines as neccesary to improve their symptoms and quality of life.2) Drug monitoring provided more than safety as it included an assessment of physical and emotional wellbeing which people with RA welcomed.
3) The work involved in drug monitoring included managing inconvenient appointment times along with travelling to drug monitor locations. Having to attend for an early appointment resulted in extra work in having to allow time to attend to physical care needs.
Implications of this research
1) Having access to flexible appointment times and monitoring locations could reduce the work people with RA and family members are required to do.2) Treatment burden may go unrecognised unless the impact of drug monitoring is assessed. Therefore when commencing drug treatment the potential for treatment burden needs to be discussed and where evident solutions which are responsive and flexivble to the person's and family members' needs can be addressed
3) For people with RA in whom treatment burden is a major concern regular face to face consultations may be helpful to assess whether the work required in attending for drug monitoring remains managable.
Further research is required to explore how best to identify and reduce treatment burden for people with RA.
Thanks to all study participants for taking part in this research.
REC name
London - Surrey Research Ethics Committee
REC reference
21/PR/0533
Date of REC Opinion
26 Apr 2021
REC opinion
Favourable Opinion