New treatment targets in heart failure: Patient reported outcome measures and subjective well-being

Background: Despite costly advances in heart failure management, heart failure is characterized by pervasive adverse and complex symptoms, functional decline, and poor quality of life. A robust theoretical framework comprehending provider and patient paradigms guided this study seeking new treatment targets to augment existing advanced therapies. Aims: The aim of this study is to examine subjective well-being associations with other patient reported outcome measures, and disease and treatment outcomes, in individuals with heart failure. Methods: This cross sectional, correlational study used data collected from 88 individuals undergoing inpatient heart failure treatment in a large urban academic medical center (50% male, average age 67±6. 9, median duration of heart failure >4 years, mean vEF =32%). Following consent, patients completed a 30 minute interview consisting of valid, reliable ‘patient reported outcome measures’ of subjective well-being, symptom burden, intrusion of illness and treatment in meaningful life pursuits, and health related quality of life. Disease, treatment and social characteristics were abstracted from medical records. Data analyses were conducted using correlation, non parametric statistics and regression models. Results: ‘Patient reported outcome measures’ had good internal reliability (Cronbach’s alpha >.8). Subjective well-being scores detected differences based on age, functional, employment and insurance statuses. Health related quality of life and subjective well-being measures correlated with illness intrusiveness (.53, -.40). The most prevalent symptoms reported (75-97%), were xerostomia, dyspnea, fatigue, pain, worry and sleep disruption. In multiple regression models, illness intrusiveness predicted subjective well-being (R2 change=.29, p≤.01) health related quality of life (R2 change= .24, p≤.01), after controlling for functional and insurance statuses. Conclusion: ‘Patient reported outcome measures’ including subjective well-being scales contribute unique findings to inform individualized heart failure treatment. New heart failure treatment targets identified in this sample include multidimensional symptom management, functional support, prognostication and advance care planning, all components of primary palliative care.

I: THE RESEACH PROBLEM... 1 Heart failure... 1 Mortality and morbidity... 2 Costs... 2 Palliative care in heart failure... 5 Palliative care... 6 Health related quality of life... 7 Symptom management... 8 Patient reported outcomes... 9 Subjective well-being... 10 Well-being... 10 Subjective well-being... 11 Gaps addressed by proposed study... 12 Well-being in illness and treatment contexts... 12 Subjective well-being... 12 Psychosocial aspects... 13 Patient reported outcome measures... 14 PROPOSED RESEARCH... 15 Study Plan... 15 Purpose and aims... 16 Study Aims... 16 Research questions... 19 Hypotheses... 20 Significance and healthcare implications... 21 Nursing implications... 22 CONCEPTUAL FRAMEWORKS AND MODELS... 24 Biopsychosocial model... 25 Palliative care paradigm... 25 Subjective well-being constructs... 26 Circumplex model of subjective well-being... 28 State and trait model of subjective well-being... 29 Illness Intrusiveness model... 30 II: REVIEW OF THE LITERATURE & STATE OF THE SCIENCE... 33 Chronic illness and well-being... 33 Heart failure... 34 Palliative Care in heart failure... 39 Subjective well-being... 45 Gaps in the literature... 48 Limitations of existing knowledge... 48 Gaps addressed by the proposed work... 50 III: METHODOLOGY... 53 Design... 53 Site and sample recruitment... 53 Inclusion and exclusion criteria... 54 Sample size... 55 Data collection... 55 Patient Centered Data... 56 Overview of Measures... 60 Patient reported outcome scales... 61 Disease factors... 66 Treatment factors... 67 Psychological, social and contextual factors... 68 Protection of human rights... 71 Privacy rules... 71 Gender, ethnic, minority inclusion... 72 Consent... 72 Risk benefit ratio and minimization of risk... 73 Data analyses plan... 74 Statistical procedures... 74 IV: RESULTS... 75 Sample recruitment... 75 Sample social characteristics... 77 Sample heart failure characteristics... 79 Sample comorbidity... 81 Sample heart failure performance measure outcomes... 82 Scale characteristics... 84 Patient reported outcome measure descriptive statistics... 84 Patient reported outcome measure reliability... 85 Subjective well-being measure outcomes... 85 Health related quality of life measure outcomes... 86 Illness intrusiveness measure outcomes... 86 Symptom measure outcomes... 87 Results by study aims... 88 Summary of Results... 117 V: INTERPRETATION OF FINDINGS... 119 Sample characteristics... 119 Age and gender... 119 Education... 120 Insurance status... 121 Provider centered outcomes... 122 Disease etiologies and effects... 122 Comorbidity... 124 Heart failure performance measures... 126 Prognostication and advance care planning... 130 viii Functional status... 132 Patient Centered Outcomes.... 133 Subjective well-being... 135 Health related quality of life... 137 Illness intrusiveness... 138 Symptom burden... 139 Longitudinal data implications... 141 Interoperability of system health records... 141 Palliative and life prolonging care... 142 Primary Palliative care... 143 Limitations... 144 Site... 144 Bias... 145 Design... 145 Data ‘not reported’... 145 Conclusions... 146 Subjective well-being... 146 Patient reported outcome measures... 147 Treatment targets... 147 Recommendations... 147 Clinical Practice... 147 Education... 148 Research ... 149 Health Policy... 150 ... 151 REFERENCES... 191 ix LIST OF TABLES 2.1 Comparison of heart failure ‘classes’ and ‘stages’...35 2.2 Heart failure evolution, per AHA/ACC ‘stages’ (2008) (with risk factors and disease alterations..35 3.1 Summary of medical record abstraction data…59 3.2 Summary of study instrument characteristics...61 4.1 Participant social characteristics …78 4.2 Participant characteristics describing heart failure ...81 4.3 Participant characteristics related to comorbidity…82 4.4 Participant characteristics related to treatment...83 4.5 Summary of ‘Patient Reported Outcome Measure’ scale Characteristics...84 4.6 Summary of scale reliability...85 4.7 Symptom burden: overall prevalence and highest symptom ratings...88 4.8 Correlation between subjective well-being and health related quality of life...89 4.9 Correlation between age and subjective well-being...90 4.10 Kruskal-Wallis test: Age and subjective well-being…91 4.11 Mann Whitney U: Age and subjective well-being…92 4.12 Mann-Whitney U test: Employment status and subjective well-being...92 4.13 Mann-Whitney U test: Insurance status and subjective well-being…93 4.14 Kruskal-Wallis test: Functional status and subjective well-being...94 4.15 Kruskal-Wallis test: Age and health related quality of life...95 x 4.16 Mann-Whitney U test: Social characteristics and health related quality of life...96 4.17 Kruskal-Wallis test: Functional status and health related quality of life...96 4.18 Correlations between illness intrusiveness and subjective well-being…97 4.19 Kruskal-Wallis test: Age and illness intrusiveness…99 4.20 Mann-Whitney U test: social characteristics and illness intrusiveness ...99 4.21 Correlations between patient reported outcome measures by participant groups...100 4.22 Correlations between patient reported outcome measures by functional status groups...102 4.23 Correlation between symptom burden and subjective well-being…103 4.24 Correlations compared between IIS and SHS, SWLS, and MLHFQ...104 4.25 Kruskal-Wallis test: Age and symptom burden...105 4.26 Mann-Whitney U test: Participant social characteristics and symptom burden…106 4.27 Kruskal-Wallis test: Functional status and symptom burden...107 4.28 Mann-Whitney U test: Functional status levels and symptom burden…108 4.29 Correlations between patient reported outcome measures by participant groups...109 4.30 Correlations between patient reported outcome measures by functional status Groups...110 4.31 Correlation between disease factors, illness intrusiveness and symptom…111 xi 4.32 Mann-Whitney U test: Measurement scales and cardiomyopathy type…112 4.33 Mann-Whitney U test: Pharmacologic treatments and symptom Burden...113 4.34 Mann-Whitney U test: Pharmacologic treatments and illness intrusiveness …114 4.35 Model 1: Hierarchical ordinary least squares regression model estimating multiple effects on subjective well-being…115 4.36 Model 2: Hierarchical ordinary least squares regression model estimating multiple effects on health related quality of life...116 4.37 Summary of results and study aims...118 5.1 Components of primary palliative care…144 LIST OF FIGURES 1.1 Heart failure signs & symptoms & native compensatory mechanisms...5 1.2 Palliative care ‘Quality of life’ assessment framework (ELNEC, 2014)... 7 1.3 Continuum of care (NQF, 2006)...26 1.4 The circumplex model of subjective well-being (McDowell, 2010) …29 1.5 State versus trait determinants of subjective well-being (Sheldon & Lyubormirsky, 2007) … 30 1.6 Illness intrusiveness theoretical framework...32 2.1 Heart failure trajectory...36 2.2 AHA guideline for 'Transition to Advanced Heart Failure' (AHA, 2012)…44 4.1 Participant referrals and disposition...76 5.1 Palliative care in heart failure trajectory…142

New treatment targets in heart failure: Patient reported outcome measures and subjective well-being

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