Abstract P167: Patient Perspectives on Experience During Collection, Results Communication and Overall Impact of Patient-reported Outcomes in Heart Failure: A Mixed Methods Study
Authors: Favel L Mondesir, Susan Zickmund, Patrick Galyean, Serena Yang, Grace Perry, John Spertus, Josef Stehlik
Journal: Circulation (2020)

Background: Patient-reported outcome (PRO) assessments are commonly used in clinical heart failure (HF) trials and have been shown to be valid, reliable, sensitive measures of patients’ symptoms, function and quality of life, as well as prognostic of clinical events. To be used in routine care, they also need to be interpretable to providers and patients. Patients’ perspectives on PRO collection and results communication have not been studied. Methods: We conducted a mixed methods study of 24 ambulatory adult HF patients (50% men) who completed PROs as part of care at a HF clinic. Study procedures included (1) qualitative telephone interviews and (2) quantitative surveys following interviews. We employed thematic analysis to analyze and code transcripts using an iterative coding process and descriptive statistics to analyze the survey. Qualitative findings were purposefully linked to quantitative results. Findings: Three themes in qualitative analyses were linked to the quantitative survey: 1. Utility of data: Most participants noted that PRO questionnaires were a useful tool to better understand their health if their providers discussed the results with them, and to provide additional information to help improve their treatment. Ninety-two % (22/24) of participants strongly agreed or agreed (SA/A) and 8% (2/24) were neutral that completing the questionnaires changed their care and improved their health. Ninety-six % (23/24) of participants SA/A and 4% (1/24) were neutral that completing the questionnaires would make evaluation of their well-being more accurate. 2. Length and frequency of data collection: Most participants felt that questionnaire length (13-29 questions completed in 3-8 minutes on average) and frequency of implementation (at every visit) were satisfactory. Sixty-three % (15/24) and 37% (9/24) of participants felt that maximum number of questions should be 5-15 and &gt;15, respectively. Eighty-three % (20/24) and 17% (4/24) of participants felt that maximum time required for completion should be 5 or 10 and &gt;10 minutes, respectively. 3. Communication with providers: Most participants noted that their providers discussed results of PRO questionnaires with them only once or not at all and participants who had this discussion with their providers felt that providers understood their responses. Sixty-two % (15/24), 21% (5/24) and 17% (4/24) of participants SA/A, were neutral and disagreed or strongly disagreed that their providers effectively discussed results of their PROs with them. Conclusions: Qualitative results provided depth and interpretability of quantitative survey results. These results indicate successful implementation and utility of PRO questionnaires in the HF clinic, while highlighting a need for more frequent discussion of PRO results between providers and patients. Further use of PROs may lead to improved cardiovascular health and prognosis in HF.