Exploring the treatment burden of disease-modifying anti-rheumatic drug monitoring in people with rheumatoid arthritis

Abstract

Objectives People with rheumatoid arthritis (RA) taking disease-modifying anti-rheumatic drugs (DMARDs) require safety monitoring to identify potential side-effects. This study aimed to explore patients’ and family members’ perspectives on DMARD monitoring, and how associated treatment burden could be minimised to optimise concordance and safety. Methods Thirteen adults with RA on DMARDs and 3 family members participated in semi-structured telephone interviews between July 2021 and January 2022. Data were analysed using a framework method. Findings were discussed with a group of stakeholders to develop implications for practice. Results Two main themes were identified: i) Making sense of drug monitoring and, ii) Work involved in drug monitoring. Participants perceived DMARDs as necessary to reduce symptoms, with drug monitoring providing an opportunity for a holistic assessment of wellbeing. Participants expressed a preference for face-to-face consultations, which allowed them to share their concerns rather than remote, often transactional, care. The limited availability of convenient appointment times, travel requirements and parking increased the work involved for patients and family members. Conclusion Drug monitoring was accepted as a necessity of DMARD treatment but increased work for people with RA, related to organising and attending appointments. The potential for treatment burden needs to be assessed proactively by clinicians when a DMARD is commenced. Where identified, strategies for minimising treatment burden can form part of a shared management plan including offering regular contact with health professionals with an emphasis on person centred care. Lay summary What does this mean for patients? Disease modifying anti-rheumatic drugs (DMARDs) are used to treat swollen joints in people with rheumatoid arthritis. Taking these drugs requires regular blood tests to ensure they remain safe to take. Attending for blood tests (referred to as drug monitoring) is a commitment which competes with other daily requirements including work and family activities. We interviewed people attending for drug monitoring to understand more about the process and how it could be made easier. We found people accepted the need to attend for blood tests as the medications were seen as necessary to reduce joint pain and swelling. By providing a range of appointment times and local monitoring facilities the work involved with travelling and parking could be reduced, making it easier for people who are working and minimising the impact on family members who often provided transport. These findings are consistent with earlier research in people living with long term conditions. Potential challenges in attending for regular blood tests should be discussed when drug treatment is being commenced. This would ensure a drug monitoring schedule that is flexible and responsive to individual needs can be implemented.

The acknowledgment of the treatment burden in the disease burden

“…The qualitative study by Ryan et al [ 1 ] shows the findings of interviews with 13 adults with RA on DMARDs and with three family members concerning perspectives of patients and family members on DMARD monitoring. Interviewees felt that drug monitoring was needed as part of DMARD treatment, but they also indicated the increased burden related to organizing and attending appointments for patients with RA and their family members.…”

“…In current RA recommendations, DMARDs are the cornerstone of RA treatment [ 2 ]. Rheumatologists who were part of the stakeholder group discussing the findings by Ryan et al [ 1 ] expressed uncertainty in addressing the treatment burden caused by DMARD monitoring. They felt that in practice this was done reactively when patients missed visits for drug monitoring, for example.…”

“…The findings by Ryan et al [ 1 ] prompt us to consider innovative solutions that can alleviate the treatment burden more proactively in RA management. Health-care innovations using nurse-led clinics, an integrated role of general practitioners and mobile health (mHealth) applications could be pivotal in improving the patient experience of daily clinical practice.…”

“…However, uptake of these solutions is hindered by many barriers [ 8 , 9 ]. For example, patients in the study by Ryan et al [ 1 ] indicated that face-to-face consultations remain necessary, and complete telemonitoring was regarded as neither adequate nor reliable by both the patient and the caregiver. Hybrid health-care delivery models that balance the advantages of technology with the need for personal contact should be explored.…”

“…In conclusion, the study by Ryan et al [ 1 ] highlights the treatment burden as a crucial aspect of the disease burden that health-care providers should factor into the shared decision-making process. It is vital to consider factors such as patient knowledge, language skills, health literacy, personal values and commitment to treatment adherence.…”