Developing a Patient Reported Experience Measure (PREM) to assess patients’ experiences with care transitions and integration

Background: Care transitions (CTs) across the care continuum (e.g., hospital to primary care/community), especially for those with complex care needs and multimorbidity, is an important focus for improvement. Complex patients in particular tend to be at higher risk for adverse events such as medication errors and rehospitalization due to poor discharge coordination and communication. Primary care plays a significant role in improving coordination and communication to support successful transitions in care. An ongoing study in Alberta, Canada called A DiseAse-Inclusive Pathway for Transitions in Care (ADAPT) focuses on integrating care by collaborating with Primary Care Providers to enhance CTs. Alberta Health Service (AHS) Primary Health Care Integration Network (PHCIN) has been leading the development of the Home to Hospital to Home (H2H2H) Transitions Guideline for several years. A major aspect of this initiative is evaluating how patients experience transitions from hospital to home. There are few validated patient reported experience measures (PREMs) that capture multiple transition points from discharge preparation, to home, to primary care. The objective of this work was to develop a PREM to capture patients experience of care while transitioning across multiple settings, with a focus on integration of care across. Approach: Methods to achieve our objective included a literature review, identification of core domains and questions across clinical settings, and then pre-testing the instrument with content experts and patients/caregivers with lived experience to establish content and face validity. After iterative pre-testing and revisions, we plan to pilot the newly developed PREM in one site prior to broader application. Psychometric testing of the PREM will be done as part of the larger study which will also explore strategies to bolster response rates from patients involved in this study aimed at improving CTs for adult patients with diverse chronic conditions and better integrating their care. Results: The literature review identified 3 potentially relevant PREM instruments. Criteria for inclusion in the review were an adult patient population, and relevance to transitions in care between hospital and primary care settings. Core domains of interest were superimposed onto PREM items, including patient knowledge, self-efficacy, care preference alignment, integration/coordination, and satisfaction throughout CTs. Existing PREMs were limited in capturing the patient experience as they transitioned through different levels of care. Items for the new PREM were developed to ensure representation of core domains of interest for CTs from hospital to home, including integration with primary care in the post-discharge period. The PREM is currently undergoing pre-testing with patient advisors (n = 5) and content experts (n = 5). Once pre-testing and revisions are complete the PREM will be applied in a small pilot, and then in the implementation evaluation of a provincial transitions in care initiative, i.e., the H2H2H Guideline. Implications: Creating an instrument that captures patient experiences as they move between acute and primary care, with a focus on integrating care will be key to gaining understanding and improving CTs. The development of a PREM to evaluate across levels of care will better inform various interest groups on how different system changes impact the patient experience. This approach to a PREM instrument also reinforces the importance of viewing the patient experience in a more integrated manner rather than in components.There are few validated PREMs in Canada, or elsewhere, that capture patient experiences throughout the transition process across the continuum of care from hospital to home. The PREM we are developing would be applicable to applied research and learning health organizations across Canada given the current gap in this area. The PREM will provide robust evidence to assess patient experience metrics to support quality improvement work and enhance integration of care.

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