Patients’ and carers’ views and expectations about intensive management for moderate rheumatoid arthritis: a qualitative study

Abstract

Intensive management for rheumatoid arthritis (RA) involves frequent hospital visits and adjusted doses or combinations of medication. Research is currently underway to test whether or not intensive management strategies are valuable in moderately active disease, however, patient views on intensive management in this disease group are unknown. The objectives of this study were to explore the views and expectations of patients with moderately active RA and of carers of patients with moderately active RA. We conducted focus groups and one-to-one interviews in 2014 with 14 participants (9 patients, 5 carers) from 4 rheumatology clinics across 3 London Hospital NHS Trusts. Non-English-speaking patients were included with the assistance of a professional translator. Focus groups and interviews were audio recorded and transcribed and transcripts analysed using a framework analysis approach. Four main themes were identified: 'Hopes and Expectations of Intensive Management', 'Acceptability of Intensive Management', 'Patient Education' and 'The Importance of Continuity of Care'. Our main findings were that attendance at frequent clinic appointments was largely acceptable to patients and carers. Views on taking higher doses of medication depended on how stable patients were on their current treatment regime. Continuity of care from the rheumatologist and the provision of written/verbal information about intensive management were important to patients and carers.

Elevating the role of carers in rheumatoid arthritis management in the Asia‐Pacific region

“…6,7 However, studies evaluating their role in RA are scarce. 8,9 One study in patients with RA found that patients were inclined to significantly underscore their level of pain, compared with their carers. 8 This could affect the rheumatologist's decision to adjust the management strategy and undermine efforts to achieve optimal results, unless further information is obtained from the carer.…”

“…8 Another study highlighted carers may help to illuminate factors that patients may not consider themselves. 9 For instance, patients were more likely to consider intensive management acceptable if their previous treatments had failed. However, carers took into consideration the patient's past experiences of side effects, treatment duration, and response to current treatment (both emotionally and physically).…”

“…The role of carers is complex, and involves providing physical, emotional and financial support 6,7 . However, studies evaluating their role in RA are scarce 8,9 . One study in patients with RA found that patients were inclined to significantly underscore their level of pain, compared with their carers 8 .…”

Patient involvement in rheumatology outpatient service design and delivery: a case study

“…Guidance and examples of how to involve patients and the public in research have been published . In Academic Rheumatology at King's College London, we have been involving patients (as ‘patient experts’) for over a decade in teaching, research and co‐authoring publications …”

“…[4][5][6] In Academic Rheumatology at King's College London, we have been involving patients (as 'patient experts') for over a decade in teaching, research and co-authoring publications. [7][8][9][10][11][12][13][14][15][16][17] In clinical practice, the traditional paternalistic attitude of 'Doctor knows best' had been the status quo for many years and quality of care equated to good clinical care. The latter has since changed to include dimensions such as safety, clinical effectiveness and patientcentredness, and is now embedded in the UK National Health Service (NHS) constitution.…”