Patients’ perspectives on the benefits of feedback on patient-reported outcome measures in a web-based personalized decision report for hip and knee osteoarthritis

Abstract

Background Applications of patient-reported outcome measures (PROMs) for individual patient management are expanding with the support of digital tools. Providing PROM-based information to patients can potentially improve care experiences and outcomes through informing and activating patients. This study explored patients’ perspectives on the benefits of receiving feedback on PROMs in the context of a web-based personalized decision report to guide care for their hip or knee osteoarthritis. Methods This qualitative descriptive interview study was nested in a pragmatic clinical trial of a personalized report, which includes descriptive PROM scores and predicted postoperative PROM scores. Patients completed a semi-structured interview within 6 weeks of an office visit with an orthopaedic surgeon. Only patients who reported receiving the report and reviewing it with the surgeon and/or a health educator were included. Data were iteratively analyzed using a combination of deductive and inductive coding strategies. Results Twenty-five patients aged 49–82 years (60% female, 72% surgical treatment decision) participated and described three primary benefits of the PROM feedback within the report: 1. Gaining Information About My Health Status, including data teaching new information, confirming what was known, or providing a frame of reference; 2. Fostering Communication Between Patient and Surgeon, encompassing use of the data to set expectations, ask and answer questions, and facilitate shared understanding; and 3. Increasing My Confidence and Trust, relating to the treatment outcomes, treatment decision, and surgeon. Conclusions Patients identified actual and hypothetical benefits of receiving feedback on PROM scores in the context of a web-based decision report, including advantages for those who had already made a treatment decision before seeing the surgeon. Findings provide insight into patients’ perspectives on how digital PROM data can promote patient-centered care. Results should be considered in the context of the homogeneous sample and complex trial. While participants perceived value in this personalized report, questions remain regarding best practices in patient-facing data presentation and engagement. Trial registration ClinicalTrials.gov, NCT03102580. Registered on 5 April 2017.

Evaluating a web‐based personalized decision report for total knee or hip replacement: Lessons learned from patients

“…In line with other research on receiving health information, patients' challenges with understanding specific information are not incompatible with perceiving overall benefits 41 . In our companion work, we identified that—notwithstanding the challenges specified in this paper—patients perceived multiple actual or hypothetical benefits of PRO‐based feedback in this report, including increased knowledge about their health status, enhanced communication with the surgeon, and increased confidence and trust 20 . Since this report was developed, similar PRO‐based reports have been developed with completed or proposed quantitative evaluations of patients' decision quality 16–18,42 .…”

“…41 In our companion work, we identified that-notwithstanding the challenges specified in this paper-patients perceived multiple actual or hypothetical benefits of PRO-based feedback in this report, including increased knowledge about their health status, enhanced communication with the surgeon, and increased confidence and trust. 20 Since this report was developed, similar PRO-based reports have been developed with completed or proposed quantitative evaluations of patients' decision quality. [16][17][18]42 These reports are heterogeneous, with some including explicit preference elicitation or values clarification modules.…”

“…A companion qualitative paper describes actual and hypothetical benefits that patients perceived from receiving PRO feedback in a decision report. 20 In the current paper, we aimed to identify patients' acceptability of the specific web-based report (including non-PRObased sections), with a focus on opportunities for refinement based on patients' (a) direct reports of confusion, (b) direct suggestions for improvements, and (c) misinterpretations as evaluated by the researchers.…”

“…Although input from patients and clinical experts was integral to the iterative development of the report, examining patients' perspectives of the final report within the context of clinical care can provide additional insights to guide development and testing of similar reports. A companion qualitative paper describes actual and hypothetical benefits that patients perceived from receiving PRO feedback in a decision report 20 . In the current paper, we aimed to identify patients' acceptability of the specific web‐based report (including non‐PRO‐based sections), with a focus on opportunities for refinement based on patients' (a) direct reports of confusion, (b) direct suggestions for improvements, and (c) misinterpretations as evaluated by the researchers.…”

Equity-Driven Implementation of Patient-Reported Outcome Measures in Musculoskeletal Care

“…Since strict risk cutoffs may exacerbate disparities, PROM-guided decision-making has implications for equity 58 . Additionally, the incorporation of patient-facing PROM information in preoperative counseling may help patients to better understand their current health status and to shape expectations about postoperative status, thereby informing patient preferences for decision-making 59,60 . One study found that a non-PROM-based decision aid increased total knee arthroplasty utilization in Black Data capture Operationalizing the same collection schedule for all patients with a condition/procedure but offering remote electronic and in-clinic options for data collection (e.g., on a tablet, or even on paper if technological literacy is a substantial barrier)…”