An Evidence-Based Theory About PRO Use in Kidney Care: A Realist Synthesis

Background: There is international interest on the use of patient-reported outcomes (PROs) in nephrology. Objectives: Our objectives were to develop a kidney-specific program theory about use of PROs in nephrology that may enhance person-centered care, both at individual and aggregated levels of care, and to test and refine this theory through a systematic review of the empirical literature. Together, these objectives articulate what works or does not work, for whom, and why. Methods: Realist synthesis methodology guided the electronic database and gray literature searches (in January 2017 and October 2018), screening, and extraction conducted independently by three reviewers. Sources included all nephrology patients and/or practitioners. Through a process of extraction and synthesis, each included source was examined to assess how contexts may trigger mechanisms to influence specific outcomes. Results: After screening 19,961 references, 84 theoretical and 34 empirical sources were used. PROs are proposed to be useful for providing nephrology care through three types of use. The first type is use of individual-level PRO data at point of care, receiving the majority of theoretical and empirical explorations. Clinician use to support person-centered care, and patient use to support patient engagement, are purported to improve satisfaction, health, and quality of life. Contextual factors specific to the kidney care setting that may influence the use of PRO data include the complexity of kidney disease symptom burden, symptoms that may be stigmatized, comorbidities, and time or administrative constraints in dialysis settings. Electronic collection of PROs may facilitate PRO use given these contexts. The second type is use of aggregated PRO data at point of care, including public reporting of PROs to inform decisions at point of care and improve quality of care, and use of PROs for treatment decisions. The third type is use of aggregated PRO data by organizations, including publicly available PRO data to compare centers. In single-payer systems, regular collection of PROs by dialysis centers can be achieved through economic incentives. Both the second and third types of PRO use include pressures that may trigger quality improvement processes. Conclusion: The current state of the evidence is primarily theoretical. There is pressing need for empirical research to improve the evidence-base of PRO use at individual and aggregated levels of nephrology care.