Development and Validation of a Patient Reported Experience Measure (PREM) for Patients with Rheumatoid Arthritis (RA) and other Rheumatic Conditions.

OBJECTIVES

Patient experience is not routinely measured in rheumatoid arthritis (RA) and no accepted standardised Patient Reported Experience Measures (PREM) tools currently exist. Commissioning for Quality in Rheumatoid Arthritis (CQRA) has developed, piloted and validated PREMs for RA and other rheumatic conditions.

METHODS

Focus groups were held with RA patients to identify key elements of the patient experience. These were mapped against the UK Department of Health Patient Experience Framework and a PREM questionnaire developed with questions specifically relating to RA and rheumatology services. The RA PREM was piloted and Cronbach's alpha used to assess internal consistency. The PREM was modified to capture experience of patients with other rheumatic conditions and further validated.

RESULTS

Ten UK sites and 524 patients were included in the RA PREM pilot and validation analysis. The RA PREM reliably captured RA patient experience and had good construct validity. Cronbach's alpha within the multiquestion domains ranged from 0.61 to 0.90 and the percentage agreement ranged from 22.5% to 70.4% with overall care. The modified PREM was evaluated in 11 UK sites and 110 patients with a range of rheumatic conditions. Cronbach's alpha ranged from 0.76 to 0.91 and the percentage agreement similarly ranged from 70% to 90% with the question on overall care.

CONCLUSIONS

The RA PREM and the modified PREM provide new valuable validated tools for capturing the patient experience in a range of rheumatic conditions. The RA PREM is currently being used in a UK National Clinical Audit of Rheumatoid and Early Inflammatory Arthritis.