Utility of Patient-Reported Outcome Instruments in Heart Failure

Abstract

Patient-reported outcomes (PRO) are defined as reports coming directly from patients about how they feel or function in relation to a health condition and its therapy. Although there are numerous compelling reasons why PRO could be an important help in clinical care, they have not evolved into clinical tools integrated into care. The purpose of this review is to assess existing PRO instruments for heart failure with respect to their psychometric properties and potential for use in clinical care. We performed a systematic search of articles published between July 2008 and January 2015 within the MEDLINE, PROMIS, PROQOLID, and Cochrane Library databases. Included instruments had to be developed and tested for heart failure and have had their development processes and psychometric properties described. A total of 31 instruments were identified, 9 of which met all inclusion criteria. After evaluating each remaining instrument in terms of psychometric and clinical criteria and symptom coverage, only 2 instruments-Minnesota Living with Heart Failure and Kansas City Cardiomyopathy questionnaire-met all evaluation criteria. Although clinically useful PRO instruments exist, increasing education to providers on the value and interpretability of PRO instruments, as well as a more streamlined approach to their implementation in the clinical setting is necessary. A clinical trial comparing the routine use of disease-specific PRO with clinical care could further support their incorporation into practice.

Palliative Care in Heart Failure

“…The addition of palliative care principles in this vulnerable population improved physical, psychosocial (anxiety/depression), and spiritual quality-of-life measures, the key domains of patient experience in serious illness. While patient-reported outcomes are historically underused as primary outcome measures in cardiology clinical trials as compared with more traditional, objective measures (such as mortality and hospitalization rates) (20), these “hard” endpoints are often less important to patients with incurable, advanced diseases (21). Instead, many of these patients have a strong desire for relief of suffering and assistance with end-of-life planning (22).…”

“…The range of the score is 0 to 48 with higher scores representing increased spirituality across the range of religious traditions. HADS is a 14-item scale divided into anxiety and depression subscales (20). Questions are scored from 0 to 3 with a cut-off point of 11 on each subscale, giving the optimal sensitivity and specificity for the presence of the corresponding psychiatric symptoms.…”

Multinational and multiethnic variations in health-related quality of life in patients with chronic heart failure

“…1–3 In heart failure (HF), where patients may experience significant impairments in health status, disease- and health-related quality of life (HRQoL) is an important patient-centered clinical outcome. 4 HRQoL as it relates to health encompasses broad concepts of physical and social functioning, mental and general health, as well as overall perceptions of energy or vitality, pain, and cognitive function. Adding to the complexity, these factors can be influenced by varying personal values, preferences, and motivation, as well as available psychological and social support.…”

Value-Based Hypothesis Testing for Cardiac Device Clinical Trials

“…Among the disease-specific instruments of interest in cardiology are the Seattle Angina Questionnaire and a variety of instruments for heart failure, with the Minnesota Living with Heart Failure Questionnaire and Kansas City Cardiomyopathy Questionnaire the most commonly used. 6 Disease-specific HRQOL instruments have demonstrated significant differences between treatment groups even in cases where primary clinical end points were not different. For example, in the Clinical Outcomes Utilizing Revascularization and Aggressive Drug Evaluation (COURAGE) trial, scores on the Seattle Angina Questionnaire were significantly better for percutaneous coronary intervention versus medical therapy between 6 and 24 months.…”

“…In heart failure populations, baseline scores, changes from baseline, and differences in change scores between groups have correlated significantly with mortality and heart failure hospitalization for both the Minnesota Living with Heart Failure Questionnaire and Kansas City Cardiomyopathy Questionnaire. 6 Specifically, in the Placement of Aortic Transcatheter Valves (PARTNER) trials of transcatheter aortic valve replacement (TAVR), the baseline Kansas City Cardiomyopathy Questionnaire demonstrated a significant association with 1-year mortality among medical therapy patients and change from the baseline Kansas City Cardiomyopathy Questionnaire at 1 and 6 months among patients undergoing TAVR quantified a significant improvement in quality of life. 7 …”