There is international interest on the use of patient-reported outcomes (PROs) in nephrology.
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.
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.
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.
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.
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The team acknowledges Joanne Czupryn’s contributions to the project for supporting data screening and extraction, and all patient partners on the patient advisory committee (including seven people on dialysis, four family caregivers of people on dialysis, and three kidney transplant recipients) for their insightful guidance and feedback throughout the duration of the project.
This work was funded by the Kidney Foundation of Canada, Allied Health Research Grant, KFOC 160024. The views expressed in this paper are those of the authors and not necessarily those of the Kidney Foundation of Canada. KSM was a New Investigator funded by Can-SOLVE CKD–KRESCENT (Canadians Seeking Solutions & Innovations to Overcome Chronic Kidney Disease; Kidney Research Scientist Core Education & National Training Program) from 2016 to 2019. This research was undertaken, in part, thanks to funding from the Canada Research Chairs (CRC) Program supporting Dr. Sawatzky’s CRC in Person-Centred Outcomes.
Conflicts of interest
ST, RF, RS, OT, SK, MKD, and JG have no conflicts of interest that are directly relevant to the content of this article. KSM declares that this research was undertaken, in part, thanks to her New Investigator funding from by Can-SOLVE CKD – KRESCENT (Canadians Seeking Solutions & Innovations to Overcome Chronic Kidney Disease; Kidney Research Scientist Core Education & National Training Program) from 2016-2019. AL was employed as a research coordinator for this project.
Availability of data and material
Data sharing is not applicable to this study as no datasets were generated or analyzed during this current study. However, the search strategy with which our literature was found is available in a Google Drive repository: https://goo.gl/ipi95o. Additional data on articles analyzed are provided in the electronic supplementary materials.
KSM designed and led the study. ST, SK, RS, and JG substantially contributed to the design of the study. KSM and AL co-led the drafting and revision of the manuscript. AL, RF, MKD, ST, OT, and KSM collaboratively enacted the data extraction, analysis, and synthesis outlined in the Methods section. All authors helped write and revise the manuscript for intellectual content, and all read and approved the final manuscript.
Below is the link to the electronic supplementary material.
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Schick-Makaroff, K., Levay, A., Thompson, S. et al. An Evidence-Based Theory About PRO Use in Kidney Care: A Realist Synthesis. Patient 15, 21–38 (2022). https://doi.org/10.1007/s40271-021-00530-2