Patients’ and healthcare professionals’ perspectives on the capacity of patients living with persistent pain to self-manage

Context: People with persistent musculoskeletal (MSK) pain or rheumatoid arthritis (RA) with multimorbidity experience significant treatment burden. We examine patient and health care professional (HCP) perspectives on the capacity of patients to self-manage and of the system to provide treatment.

Objectives To derive a taxonomy of factors that 1) affect the capacity of those living with persistent musculoskeletal pain/RA to self-manage and 2) increase or decrease a HCP’s capacity to treat multimorbid patients with persistent MSK pain/RA.

Study Design and Analysis: Qualitative interviews; analysed using a conceptual framework underpinned by Burden of Treatment Theory (BOTT). BOTT has been used in patients to explore the balance between ‘work’ e.g. tasks of self-care given to patients by HCPs, and ‘capacity’ e.g. ability to perform tasks.

Setting and Population: Maximum variation sample: 80 people with RA or MSK pain; 40 HCPs (primary/secondary care) in Scotland.

Results: Patients reported variation in capacity of HCPs to care for them: lack of communication between specialities and lack of knowledge of patients’ wider health issues caused frustration. Factors increasing patient capacity: personal attributes/skills; supportive personal/professional networks; provision of appropriate local services; financial resources. Factors decreasing patient capacity: lack of understanding of ‘invisible’ conditions; life workload, particularly caring responsibilities; financial constraints. Focussing on relational/communication BOTT domains, we created a taxonomy of factors affecting HCPs’ ability to provide care for RA/MSK patients. Factors increasing HCP capacity: well-defined routes for primary-secondary care communication; close spatial setting (e.g. shared clinics allowing personal relationships to develop); facilitating informal interaction between HCPs; personal relationships facilitating interaction; greater knowledge of the patient, professional confidence and ability to act as patient advocate; greater personal tenacity. Factors decreasing HCP capacity: ill-defined communication routes; poor quality referral letters; junior staff: newer HCPs may lack professional confidence, with fewer contacts and limited system knowledge.

Conclusions: Providing care for patients with multimorbidity and persistent MSK pain/RA requires effective interaction between HCPs. Our taxonomy of factors identifies points for intervention to inform research, practice and policy.