Development and feasibility of a patient-reported experience survey for outpatients with liver disease

Objective To design a patient-reported experience survey (PRES) for outpatients with liver disease and to understand the feasibility of delivering the survey. Design/methods A PRES was codeveloped by healthcare professionals (HCPs) and patient representatives and included questions covering: patient expectations, understanding and involvement with care, stigma and communication. A feasibility study was undertaken at Leeds Teaching Hospitals NHS Trust (LTHT), University Hospitals Dorset NHS Foundation Trust (UHD) and Gateshead Health NHS Foundation Trust (GHT). Response rate was assessed using a margin of error calculation with a threshold set <10%. Results A total of 122 responses from 1182 patients (10.3%) were received, achieving a projected margin of error of 8.4% for the total sample. However, no individual site achieved a projected margin of error <10% (LTHT 11.7%, UHD 18.5% and GHT 16.5%). Responses were received by patients who attended either face-to-face (87.7%) and telephone appointments (12.3%) and predominantly completed electronically (77.9%). 9.8% of patients reported seeing an HCP they were not expecting. While patients were predominantly satisfied with their experience, 9.0% were not satisfied with the frequency of follow-ups, and 6.6% did not know how to contact the clinical team following the appointment. Conclusion We have developed a PRES specifically for outpatients with liver disease. While it is feasible to deliver the survey to understand national experience, there are challenges in achieving an adequate response rate to allow for comparison of centres. Further work is required to improve representation and response rate of surveys among patients with liver disease.