P s y c h o s o c i a l Fu n c t i o n i n g an d Q u a l i t y of Li f e in A d u l t s wi t h C o n g e n i t a l H e a r t D i s e a s e an d H e a r t Fa i l u re Adrienne H. Kovacs, PhD, CPsycha,b,*, Philip Moons, PhD, RNc,d,e KEYWORDS  Adult  Heart defects  Congenital  Quality of life  Psychosocial  Heart failure

KEY POINTS  North American adults with congenital heart disease (CHD) are at increased risk of psychosocial difficulties, including depression and anxiety. This finding has been less consistently shown in European studies.  Data regarding the quality of life (QOL) of adults with CHD are inconsistent, likely because of differences in study methodology.  Adults with heart failure associated with acquired heart disease are likely to experience impaired psychosocial functioning and QOL.  Although research is limited, it is reasonable to predict that adults with CHD who develop heart failure are vulnerable to psychosocial and QOL impairment.  An interdisciplinary approach to clinical care and research is recommended in order to attend to the broader psychosocial and QOL implications of living with CHD and heart failure.

Adults with congenital heart disease (CHD) represent a growing population of cardiac patients. Because patients with CHD of moderate to great complexity are not cured, CHD is considered to be a chronic medical condition to which patients are expected to adapt throughout their lives. One common adult-onset development is heart failure,1 and approximately 1 in 4 adults with CHD die of heart failure.2,3 An exclusive focus on medical symptoms and treatment neglects the broader

psychosocial and quality-of-life (QOL) implications of living with CHD and heart failure. The 3 aims of this article are (1) to summarize what is currently known about the psychosocial functioning and QOL of adults with CHD, (2) to summarize what is known about the psychosocial functioning and QOL of adults with heart failure associated with acquired heart disease, and (3) to generate a discussion regarding the psychosocial and QOL implications of managing heart failure associated with CHD.

The authors have nothing to disclose. a Toronto Congenital Cardiac Centre for Adults, Peter Munk Cardiac Centre, University Health Network, 585 University Avenue, 5-NU-523, Toronto, Ontario M5G 2N2, Canada; b Department of Psychiatry, Faculty of Medicine, University of Toronto, 250 College Street, 8th Floor, Toronto, Ontario M5T 1R8, Canada; c Department of Public Health and Primary Care, KU Leuven, Kapucijnenvoer 35 PB 7001, Leuven 3000, Belgium; d Division of Congenital and Structural Cardiology, Department of Cardiovascular Sciences, University Hospitals Leuven, Herestraat 49, Leuven 3000, Belgium; e The Heart Centre, Copenhagen University Hospital, Blegdamsvej 9, Copenhagen 2100, Denmark * Corresponding author. Toronto Congenital Cardiac Centre for Adults, Peter Munk Cardiac Centre, University Health Network, 585 University Avenue, 5-NU-523, Toronto, Ontario M5G 2N2, Canada. E-mail address: [email protected] Heart Failure Clin 10 (2014) 35–42 http://dx.doi.org/10.1016/j.hfc.2013.09.003 1551-7136/14/$ – see front matter Ó 2014 Elsevier Inc. All rights reserved.




Kovacs & Moons Psychosocial functioning and QOL are interrelated, both in CHD and heart failure,4–7 although they are distinct entities. Psychosocial functioning is an umbrella term that includes both psychological and social factors, as well as their interplay. Psychological factors include mood, anxiety, and cognitive functioning, and examples of social factors include social support and social role fulfillment (eg, employment). Psychosocial factors have been shown to affect QOL among adults with CHD.8,9 QOL is also sometimes used as an umbrella term, in that it encompasses psychosocial functioning as well as other factors such as health symptoms and functional status, lifestyle, and life conditions.10 It is this broadness that has hampered a solid understanding of the concept of QOL, because it has led to multiple conceptualizations and definitions, each of which is a subject for debate.8 However, concept analyses, concept clarifications, and structural equation modeling have shown that it is most appropriate to define QOL in terms of life satisfaction.8,11–14 As a reflection of this conceptual foundation, the following definition for QOL has been proposed: “the degree of overall life satisfaction that is positively or negatively influenced by individuals’ perception of certain aspects of life important to them, including matters both related and unrelated to health.”15 Life satisfaction is being increasingly used in QOL studies of CHD, whereas heart failure studies have typically defined QOL from a functional or health status perspective. Nonetheless, health status and QOL are related, albeit distinct, concepts, and therefore should not be used interchangeably.16

ADULTS WITH CHD: PSYCHOSOCIAL AND QOL CONSIDERATIONS Psychosocial Functioning of Adults with CHD International guidelines for the care of adults with CHD underscore the importance of attending to patient psychosocial needs.17–19 Approximately 1 in 3 North American adults with CHD experience difficulties with depression and/or anxiety,20–23 and this includes patients considered to be welladjusted by their cardiologists.21 However, European data regarding psychological outcomes are less consistent. In a series of Dutch studies, the emotional functioning of adults with CHD was observed to be similar, and occasionally superior, to reference norms.24,25 A recent Italian study similarly concluded that patient psychological wellbeing was comparable with reference norms.26 German patients have been shown to be similar to reference norms in trait anxiety, although their rates of state anxiety were increased.27 However, Portuguese adolescents and adults with CHD

have been shown to be at increased risk of psychopathology.28 Regardless of the presence or absence of formal psychiatric diagnoses, many adults with CHD of moderate to great complexity face typical adult stressors, such as managing careers, relationships, and finances, in addition to a unique set of stressors related to living with a chronic medical condition. It has been noted that, “psychosocial challenges are part of the everyday lives of adults with CHD, yet they are rarely addressed as part of routine medical care.”29 Intrapersonal concerns include dealing with uncertainty, balancing goals with limits, and people accepting a health condition without letting it define them; CHD has been described as the “worst part time job.”29 Interpersonal concerns include feeling different from peers, body image concerns, social isolation, overprotection from parents and teachers, and ongoing medical surveillance and interventions that disrupt lives. Although it is important to avoid generalizations because there are many high-achieving adults with CHD, as a group, they seem less likely to pursue higher education or secure employment.25,30,31 The impact of CHD complexity on psychosocial outcomes remains unclear. Some researchers have observed that psychosocial functioning is poorer among patients with more complex CHD,21,28,32 whereas others have not detected this relationship.20,23,33,34 Most likely, there are multiple factors that interact to contribute to higher or lower psychosocial functioning. The following is a list of correlates of poorer psychological functioning in adults with CHD:        

Female sex28,32 Lower exercise capacity32,35,36 Restrictions placed by physicians32 Body image/patient perceptions of scarring32,37 Perceived health status or disease severity23,26,38 Poor social support/loneliness/social anxiety/ poor social problem solving23,28,39 Poorer academic performance28 Perceived financial strain40

Most adults with CHD with significant depression or anxiety do not receive appropriate mental health treatment.22,23,33 There are also no empirically evaluated psychosocial interventions for adults with CHD.41 This is in contrast with the existence of dozens of psychological intervention trials for adults with acquired heart disease.42 A survey of adults with CHD revealed that half report high interest in at least one area of psychological

Psychosocial Functioning and Quality of Life treatment, most commonly stress management and coping with heart disease.43 Focus group research suggests that adults with CHD are interested in psychological counseling in addition to having opportunities to connect with other adults with CHD and psychoeducation (eg, wanting to understand typical psychological reactions of adults with CHD going through similar situations).29 In addition, as a group, adults with CHD are interested in giving back to other patients; approximately one-third of patients are interested in providing peer support.43

QOL of Adults with CHD In 2013, 2 systematic literature reviews on QOL in adults with CHD were published.44,45 These 2 reviews taken together include all relevant quantitative studies published through January 2013. In general, patients have a reduced QOL if QOL is defined in terms of physical functioning.44 However, when QOL is defined differently, QOL in patients with CHD can be similar or even better than that of healthy counterparts.44,45 These reviews concluded that the inconsistent findings across studies could be the result of methodological limitations and differences in the definition of QOL. A major issue is whether QOL is measured in terms of functional consequences (healthrelated QOL) or in terms of satisfaction with life (overall QOL). The following is a list of correlates of poorer QOL among adults with CHD:  Lower academic performance education46,47  Lower employment rates47  Fewer daily activities48  Worse functional class49  Lower exercise capacity48  Lower social support46,50  Cardiac surgery46,50  Implantable cardioverter defibrillator51  Physical limitations46  Type D (distressed) personality5


Furthermore, several studies reported inconsistencies regarding the relationship between QOL and age46,47,50,52; sex46,47,50; medication46,50; disease severity46,47,50; and severity of residual lesions.46,50 In addition, QOL seemed to be unrelated to CHD subtype,46 cyanosis,50 personal resources,50 and family environment.50 In summary, QOL in adults with CHD reflects multiple factors and is to a limited extent determined by their heart defect. Demographic and psychosocial factors seem to play an important role in determining QOL. However, it is difficult to

interpret the study findings because of inconsistencies in methods and results among these different studies.

ADULTS WITH HEART FAILURE: PSYCHOSOCIAL AND QOL CONSIDERATIONS Psychosocial Functioning of Adults with Heart Failure A meta-analysis of 34 publications revealed that clinically significant depression was reported in 22% of adults with heart failure, although the rate was higher in studies that used questionnaires (34%) versus studies that used diagnostic interviews (19%).53 The relationship between depression and disease severity in heart failure is more linear than has been observed in CHD research, because this same meta-analysis concluded that depression was higher among patients with functional class IV symptoms (42%) versus class I symptoms (11%).53 Among adults with heart failure associated with acquired heart disease, depression is associated with higher rates of death and secondary events (risk ratio, 2.1) and there are trends toward more frequent hospitalizations and emergency department visits as well as increased health care usage.53 Adams and colleagues54 conducted a 12-year prospective observational study of 985 adults with heart failure (mean age, 69 years). Across the extended follow-up period, 80% of patients with increased symptoms of depression died, compared with 73% of those without increased symptoms (P 5 .01). Changes in symptoms of depression are also associated with clinical outcomes. Sherwood and colleagues55 conducted a prospective 5-year study of 147 patients with heart failure with ejection fraction less than 40% (mean age, 57 years). After controlling for baseline depressive scores and clinical risk factors, a 1-year increase in the depression score was associated with increased risk of death or hospitalization at a mean follow-up of 5 years. In addition to depression, anxiety has also been linked with shorter event-free survival.56 Several psychosocial interventions for adults with heart failure have been developed and evaluated. A 2006 meta-analysis identified 6 studies in which interventions targeting depression in adults with heart failure were evaluated.53 Despite methodological limitations, results suggested reductions in depressive symptoms.53 Other interventions targeting psychological distress have been published after that meta-analysis. For example, a home-based disease management program resulted in reduced depression, anxiety, and heart failure hospitalization.57 However, not



Kovacs & Moons all trials prove successful. A randomized, doubleblind, placebo-controlled trial of sertraline revealed that this antidepressant medication was safe for patients with heart failure, although it was not superior to placebo in reducing symptoms of depression.58 In summary, compared with CHD research, heart failure research suggests (1) a stronger relationship between disease severity and depression, (2) the existence of a relationship between psychological factors and medical outcomes, and (3) the importance of developing and evaluating interventions focused on reducing psychological distress.

QOL of Adults with Heart Failure Over the past decades, numerous studies on QOL in patients with heart failure have been published. QOL was assessed predominantly as part of the evaluation of specific interventions, such as pharmacologic treatments (eg, b-blockers, angiotensin-converting enzyme inhibitors, diuretics), pacing devices, exercise training and rehabilitation, or comprehensive disease management.59,60 In these studies, QOL is mostly approached from a functional perspective. Studies in heart failure that define QOL as life satisfaction are more scant. Empirical studies showed that QOL of patients with heart failure is severely affected,61 and is described as the lowest compared with patients with other chronic conditions, such as chronic hepatitis C infection, chronic hemodialysis, and major depression.62 The most important demographic determinants of QOL in patients with heart failure are gender and age. In general, QOL is more diminished in women with heart failure than in men.61,63 Younger patients also report a poorer QOL than older patients with heart failure.60,61 This is mainly because of higher levels of depression and anxiety, and the higher importance of loss of activities and roles for younger patients.64 Clinical factors that are related to a lower QOL are an increasing disease severity and symptoms associated with heart failure.61 The most commonly reported symptoms in patients with heart failure are dyspnea, fatigue, ankle edema, appetite problems, and constipation. Asymptomatic patients, or those who by treatment obtain an asymptomatic left ventricular dysfunction, have a similar QOL to individuals in the general population.65

THE PSYCHOSOCIAL AND QOL IMPLICATIONS OF MANAGING HEART FAILURE ASSOCIATED WITH CHD In adults with CHD, psychosocial outcomes are inconsistent across studies and disease severity

seems minimally associated with psychosocial functioning. In contrast, among adults with heart failure caused by acquired heart disease, results more clearly suggest diminished psychological functioning and there is a notable impact of disease severity. This finding leads to challenges in predicting the degree to which adults with CHD who develop heart failure experience psychosocial impairment. North American research suggests that CHD and heart failure are both associated with an increased risk of psychological distress. Risk factors for psychological distress among adults with CHD include reduced exercise capacity and lower perceived health status, both of which are common in heart failure.23,26,32,35,36 Further, among adults with heart failure, depression is linked with various symptoms, including fatigue, sleep disturbance, and pain.66 Thus, adults with CHD who develop heart failure may be a particularly vulnerable subset of patients at increased risk of psychological maladjustment. There are no published studies that have been undertaken specifically to understand the impact of heart failure on the QOL of adults with CHD. However, given the detrimental effect that heart failure has on patients’ QOL, particularly in younger patients, this issue should be put on the research agenda. Left ventricle ejection fraction could be used as a surrogate for heart failure. To the best of our knowledge, there is only 1 study in which the relationship between left ventricular ejection fraction and QOL has been investigated.67 That study showed a nonsignificant correlation coefficient of these two variables of 0.1.67 Although the New York Heart Association (NYHA) classification is sometimes used as a surrogate for heart failure severity, this approach is not advocated because data obtained in the previously mentioned study67 showed that the correlation between left ventricular ejection fraction and NYHA class was significant (P

Psychosocial functioning and quality of life in adults with congenital heart disease and heart failure.

Complex congenital heart disease (CHD) is a chronic medical condition to which patients are expected to adapt throughout their lives. Many patients ar...
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