The Patient Voice Helps to Amplify Heart Failure Outcome Knowledge


Individuals living with heart failure in the United States are expected to top 8 million by 2030 vs the close to 6 million living with the disease between 2015 and 2018.

Patient-reported outcomes should be assessed more often in the heart failure (HF) setting, with findings from an analysis of patients living with HF with preserved ejection fraction (HFpEF) showing significant impairment from the symptoms and physical limitations of the disease beyond the clinical setting.

These new findings reported in Patient Preference and Adherence highlight that PROs are likely as important as the clinical and economic outcomes assessed by clinicians, health systems, and payers. The 23-item Kansas City Cardiomyopathy Questionnaire (KCCQ-23; score range: 0-24, very poor/poor; 25-49, poor to fair; 50-74, fair to good; 75-100, good to excellent) and the Patient-Reported Outcomes Measurement Information System Global Health 10-item Short Form (PROMIS Global-10) Questionnaire were used to determine patient health status.

Patients were identified for inclusion via longitudinal and pharmacy claims in the HealthCore Integrated Research Database, and they had to have at least 1 medical claim with an International Classification of Diseases, Ninth Revision, Clinical Modification or Tenth Revision, Clinical Modification code for diastolic HF.

The mean (SD) patient age was 74.0 (10.6) years, and most were female (54.7%), were living in the Midwest (68.2%), had Medicare Advantage insurance coverage (85.5%), had a health maintenance organization as their health plan type (65.9%), were married or had a domestic partner (51.8%), were retired or disabled (81.1%), and were making less than $25,000 (36.5%) or between $25,000 and $49,999 (29.9%) a year.

“Understanding health status from a patient’s perspective and economic burden from a health plan’s point of view are equally important in assessing the burden of disease, improving patient centered care, and properly allocating health care resources,” the investigators wrote. “The study focused on HFpEF as the treatment options for this group of patients are being actively explored but have been very limited until recently.”

Among the patients, who had been living with HF for a mean (SD) of 9.2 (10.2) years, clinical data showed the top 3 comorbidities were hypertension (96.0%), dyslipidemia/hyperlipidemia (81.1%), and cardiac arrhythmias (70.6%). Most were also classified as overweight (body mass index [BMI], 25-30 kg/m2) or obese (BMI, 30 to < 35 kg/m2), and a majority self-reported slight limits (37.0%; New York Heart Association [NYHA] level II disease), limited (31.1%; NYHA level III disease) or no limitations on physical activity (22.2%; NYHA level I).

Most KCCQ-23 mean (SD) measures fell in the fair-to-good range. Overall and clinical summary scores were 64.8 (25.4) and 63.0 (24.3), respectively; total symptom score was 67.7 (24.8); physical limitations score, 58.3 (27.8); quality of life score, 70.4 (30.2); and social limitation score, 63.8 (31.6). In contrast, mean physical health and mental health summary scores came in at only 39.9 (9.2) and 45.5 (9.4), respectively.

Forty-eight percent of participants reported at least 1 inpatient hospital admission in the year leading up to survey inclusion; 20.1%, at least one 30-day hospital stay; and 40%, at least 1 emergency department visit. For hospitalizations only, mean (SD) stays were 5 (4.55) days long. Close to all patients, however, reported at least 1 office visit.

HF-related hospitalizations were 82.6% of all hospitalizations, and among those who received medications, 2.7 classes were typically prescribed and patients were covered by HF-related medications for 90% of the year. Loop diuretics were the most common medication class prescribed (76.1%), followed by β-blockers (53.7%) and angiotensin-converting enzyme inhibitors (31.9%).

Total health care costs averaged $38,243, and of this amount, 40.2% was attributed to HF-related costs.

Patients who reported no changes to their HF treatment, lifestyle, or symptoms had higher KCCQ-23 scores by 6.6, 13.3, and 16.3 points compared with those reporting 1, 2, or 3 or more changes, respectively, in these areas. Lower scores were also attributed to hospital admission for any reason during the baseline period (P = .02) and being classified as morbidly obese (P < .01), but higher scores to higher annual household income.

“The feature that distinguishes our study from previously published research was our ability to link patients’ survey data with their administrative claims data, which added information on HF prescription fill patterns, health care resource utilization, and health care expenses during the 12-month baseline period,” the authors underscored. “Our analysis confirmed a high disease burden for patients and payers.”

Most important is that their findings highlight how important it is that patients’ voices be heard in clinical practice.


Nguyen C, Bamber L, Willey VJ, Evers T, Power TP, Stephenson JJ. Patient perspectives on the burden of heart failure with preserved ejection fraction in a US commercially insured and Medicare Advantage population: a survey study. Patient Prefer Adherence. 2023;17:1181-1196. doi:10.2147/PPA.S395242

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