Development and validation of a tool to measure patient experience in chronic disease care

Background: There is a global increase in the prevalence of non-communicable diseases and a growing understanding that patients need to be involved in their care. Patient experience should be assessed and the information used to improve on the planning and delivery of health services. Aim: This study described the development and validation of a patient-reported experience measure (PREM) tool which is appropriate for the South African context, to assess self-reported patient experience of chronic care. Setting: The study was conducted at four primary health care facilities in the Cape Town Metropole. Methods: This was a validity and reliability study with multiple phases to develop and determine the psychometric properties of a novel tool. It consisted of three phases, namely: Phase 1 - Consensus Validity; Phase 2 - Face Validity; Phase 3 - Reliability. Phase 1 consisted of an expert panel reaching consensus on a draft tool. Phase 2a consisted of qualitative semi-structured interviews and cognitive interviews. Phase 3 tested the internal consistency of the tool, the time necessary to complete, as well as floor and ceiling effects with 200 questionnaires. Results: The process described resulted in a final questionnaire with n = 10 items in three languages that was easily understood by patients. Internal consistency was determined with the overall Cronbach's alpha 0.86. This PREM has been named Chronic Care Assessment of Patient Experience. Conclusion: Using best practice guidance in tool construction and validation, we delivered a PREM with the potential to improve the quality of care from the perspective of patients. Implementation studies are now required to determine how best to use this tool in routine practice.