Patient Perspectives on the Completion and Use of Patient-Reported Outcome Surveys in Routine Clinical Care for Heart Failure

Mondesir, Favel L.; Zickmund, Susan; Yang, Serena; Perry, Grace; Galyean, Patrick; Nativi-Nicolau, José; Kemeyou, Line; Spertus, John A.; Stehlik, Josef

doi:10.1161/circoutcomes.120.007027

Cited by 18 publications

(16 citation statements)

References 4 publications

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“…Prior work has demonstrated that patient valuation of PRO is highly dependent on clinician engagement with the data. 26 As part of the PRO-HF trial, we are formally evaluating the perspectives of HF clinicians on KCCQ-12 implementation. 15 These interviews will further elucidate the potential utility and barriers of patient-reported health status assessment from the clinician perspective.…”

Section: Discussionmentioning

confidence: 99%

Impact of Patient-Reported Outcome Measurement in Heart Failure Clinic on Clinician Health Status Assessment and Patient Experience: A Substudy of the PRO-HF Trial

Sandhu

Zheng

Kalwani

et al. 2023

Circ: Heart Failure

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Background: Clinicians typically estimate heart failure (HF) health status using the New York Heart Association (NYHA) class, which is often discordant with patient-reported health status. It is unknown if collecting patient-reported health status improves the accuracy of clinician assessments. Methods: The Patient-Reported Outcomes in Heart Failure Clinic (PRO-HF) trial is a randomized, non-blinded trial evaluating routine Kansas City Cardiomyopathy Questionnaire-12 (KCCQ-12) collection in HF clinic. Patients with a scheduled visit to Stanford HF clinic between August 30, 2021, and June 30, 2022 were enrolled and randomized to KCCQ-12 assessment or usual care. In this prespecified sub-study, we evaluated whether access to the KCCQ-12 improved the accuracy of clinicians' NYHA assessment or patients' perspectives on their clinician interaction. We surveyed clinicians regarding their patients' NYHA class, quality of life, and symptom frequency. Clinician responses were compared with patients' KCCQ-12 responses. We surveyed patients regarding their clinician interactions. Results: Of the 1,248 enrolled patients, 1,051 (84.2%) attended a visit during the sub-study. KCCQ-12 results were given to the clinicians treating the 528 patients in the KCCQ-12 arm; the 523 patients in the usual care arm completed the KCCQ-12 without the results being shared. The correlation between NYHA class and KCCQ-12 Overall Summary Score was stronger when clinicians had access to the KCCQ-12 (r=-0.73 vs. r=-0.61, p<0.001). More patients in the KCCQ-12 arm strongly agreed that their clinician understood their symptoms (95.2% vs. 89.7% of respondents; [OR 2.27; 95% CI: 1.32-3.87)]. However, patients in both arms reported similar quality of clinician communication and therapeutic alliance. Conclusions: Collecting the KCCQ-12 in HF clinic improved clinicians' accuracy of health status assessment; correspondingly, patients believed their clinicians better understood their symptoms. Registration: URL: ClinicalTrials.gov; Unique Identifier: NCT04164004

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Section: Discussionmentioning

confidence: 99%

Impact of Patient-Reported Outcome Measurement in Heart Failure Clinic on Clinician Health Status Assessment and Patient Experience: A Substudy of the PRO-HF Trial

Sandhu

Zheng

Kalwani

et al. 2023

Circ: Heart Failure

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“…Importantly, per a survey regarding patient perspectives on completion and use of PRO measures in routine clinical care, overall, patients reported that PRO measures (including PROMIS measures) were useful in identifying concerns but also indicated that their value was reduced by lack of discussion with clinicians. 76 …”

Section: Discussionmentioning

confidence: 99%

Validity of Patient-Reported Outcomes Measurement Information System Physical, Mental, and Social Health Measures After Left Ventricular Assist Device Implantation and Implications for Patient Care

Hahn

Walsh

Allen³

et al. 2023

Circ: Cardiovascular Quality and Outcomes

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BACKGROUND: A better understanding is needed of the burdens and benefits of left ventricular assist device (LVAD) implantation on patients’ physical, mental, and social well-being. The purpose of this report was to evaluate the validity of Patient-Reported Outcomes Measurement Information System (PROMIS) measures for LVAD patients and to estimate clinically important score differences likely to have implications for patient treatment or care. METHODS: Adults from 12 sites across all US geographic regions completed PROMIS measures ≥3 months post-LVAD implantation. Other patient-reported outcomes (eg, Kansas City Cardiomyopathy Questionnaire-12 item), clinician ratings, performance tests, and clinical adverse events were used as validity indicators. Criterion and construct validity and clinically important differences were estimated with Pearson correlations, ANOVA methods, and Cohen d effect sizes. RESULTS: Participants’ (n=648) mean age was 58 years, and the majority were men (78%), non-Hispanic White people (68%), with dilated cardiomyopathy (55%), long-term implantation strategy (57%), and New York Heart Association classes I and II (54%). Most correlations between validity indicators and PROMIS measures were medium to large (≥0.3; p <0.01). Most validity analyses demonstrated medium-to-large effect sizes (≥0.5) and clinically important differences in mean PROMIS scores (up to 14.8 points). Ranges of minimally important differences for 4 PROMIS measures were as follows: fatigue (3–5 points), physical function (2–3), ability to participate in social roles and activities (3), and satisfaction with social roles and activities (3–5). CONCLUSIONS: The findings provide convincing evidence for the relevance and validity of PROMIS physical, mental, and social health measures in patients from early-to-late post-LVAD implantation. Findings may inform shared decision-making when patients consider treatment options. Patients with an LVAD, their caregivers, and their clinicians should find it useful to interpret the meaning of their PROMIS scores in relation to the general population, that is, PROMIS may help to monitor a return to normalcy in everyday life. REGISTRATION: URL: https://clinicaltrials.gov ; Unique: identifier: NCT03044535.

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“…Although many studies in this review used patient-reported outcome measures, the essential contribution of these data was ultimately “for research purposes only” to increase knowledge or to describe patient perspectives, expectations, or experiences. 203,204 A scoping review revealed 34 disease-specific patient-reported outcome measures for use with different cardiac conditions that have not been consistently integrated into clinical care despite the compelling ways in which these data could advance improvements in care. 204 This suggests the need to consider the opportunities for integrating and using these measures beyond research, in clinical care.…”

Section: Discussionmentioning

confidence: 99%

Person-Centered Models for Cardiovascular Care: A Review of the Evidence: A Scientific Statement From the American Heart Association

Rossi¹,

Granger²,

Bruckel³

et al. 2023

Circulation

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Cardiovascular disease remains the leading cause of death and disability in the United States and globally. Disease burden continues to escalate despite technological advances associated with improved life expectancy and quality of life. As a result, longer life is associated with multiple chronic cardiovascular conditions. Clinical guidelines provide recommendations without considering prevalent scenarios of multimorbidity and health system complexities that affect practical adoption. The diversity of personal preferences, cultures, and lifestyles that make up one’s social and environmental context is often overlooked in ongoing care planning for symptom management and health behavior support, hindering adoption and compromising patient outcomes, particularly in groups at high risk. The purpose of this scientific statement was to describe the characteristics and reported outcomes in existing person-centered care delivery models for selected cardiovascular conditions. We conducted a scoping review using Ovid MEDLINE, Embase.com, Web of Science, CINAHL Complete, Cochrane Central Register of Controlled Trials through Ovid, and ClinicalTrials.gov from 2010 to 2022. A range of study designs with a defined aim to systematically evaluate care delivery models for selected cardiovascular conditions were included. Models were selected on the basis of their stated use of evidence-based guidelines, clinical decision support tools, systematic evaluation processes, and inclusion of the patient’s perspective in defining the plan of care. Findings reflected variation in methodological approach, outcome measures, and care processes used across models. Evidence to support optimal care delivery models remains limited by inconsistencies in approach, variation in reimbursement, and inability of health systems to meet the needs of patients with chronic, complex cardiovascular conditions.

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Patient Perspectives on the Completion and Use of Patient-Reported Outcome Surveys in Routine Clinical Care for Heart Failure

Cited by 18 publications

References 4 publications

Impact of Patient-Reported Outcome Measurement in Heart Failure Clinic on Clinician Health Status Assessment and Patient Experience: A Substudy of the PRO-HF Trial

Impact of Patient-Reported Outcome Measurement in Heart Failure Clinic on Clinician Health Status Assessment and Patient Experience: A Substudy of the PRO-HF Trial

Validity of Patient-Reported Outcomes Measurement Information System Physical, Mental, and Social Health Measures After Left Ventricular Assist Device Implantation and Implications for Patient Care

Person-Centered Models for Cardiovascular Care: A Review of the Evidence: A Scientific Statement From the American Heart Association

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