The Impact of Illness Perceptions and Disease Severity on Quality of Life in Adults with Congenital Heart Disease

AbstractBackgroundDespite an increasing prevalence of adults living with a CHD, little is known about the psychosocial impact of CHD. We sought to investigate the relative impact of disease severity and patients’ perceptions about their condition on depression, anxiety, and quality of life over a period of a year.MethodsA total of 110 patients aged over 16 years completed an initial questionnaire containing measures for anxiety, depression, quality of life, and illness perceptions when they attended the Adult Congenital Heart Disease Clinic. Cardiologists rated the patients’ disease severity and illness course. A year later, patients were invited to complete the same measures. Regression analyses were performed to determine the relative impact of illness perceptions and disease severity on psychological outcomes a year later.ResultsAt baseline, 23% of the study population had depressive symptoms and 30% had elevated trait anxiety. After controlling for associations with disease-related variables, illness perceptions explained 28% of the variance in depression, 40% anxiety, and 27% overall quality of life at baseline. Baseline illness perceptions bivariately predicted quality of life, cardiac anxiety, and depression 1 year later, and regression analyses controlling for other factors showed that they were significant predictors of outcomes 1 year later.ConclusionSymptoms of depression and anxiety are common among adults with CHD. Patients’ illness perceptions are related to psychological outcomes, especially cross-sectionally. Future research could investigate whether an intervention to discuss patients’ perceptions about their CHD can improve mental health and quality of life.

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Quality of life of adult congenital heart disease patients: a systematic review of the literature

Cardiology in the Young ◽

10.1017/s1047951112002351 ◽

2013 ◽

Vol 23 (4) ◽

pp. 473-485 ◽

Cited By ~ 56

Author(s):

Theodora Fteropoulli ◽

Jan Stygall ◽

Shay Cullen ◽

John Deanfield ◽

Stanton P. Newman

Keyword(s):

Quality Of Life ◽

Congenital Heart Disease ◽

Heart Disease ◽

Disease Severity ◽

Congenital Heart ◽

Adult Congenital Heart Disease ◽

Adult Population ◽

Targeted Interventions ◽

Adult Congenital

AbstractAimsThis review explores the quality of life of adult congenital heart disease patients and the relationship between disease severity and quality of life.MethodsWe searched seven electronic databases and the bibliography of articles. The 31 selected studies fulfilled the following criteria: adult population; quantitative; assessment of quality of life and/or impact of disease severity on quality of life using validated measures; English language. Data extraction forms were used to summarise the results.ResultsThere are evident methodological limitations within the reviewed studies such as heterogeneous populations, designs, and quality of life conceptualisations and measurements. Despite these problems, findings suggest that the quality of life of adult congenital heart disease patients is compromised in the physical domain compared with their healthy counterparts, whereas no differences were found in relation to the psychosocial and environmental/occupational domain. Some severity variables appear to be significant correlates of quality of life and could be considered in a future standardised classification of disease severity.ConclusionThe methodological limitations of past research in relation to the definition and measurement of quality of life, the study designs, and disease severity classifications need to be addressed in future studies in order to provide robust evidence and valid conclusions in this area of study. This will enable the development of targeted interventions for the improvement of quality of life in the adult population of congenital heart disease patients.

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Abstract 16774: Adverse Childhood Experiences Reported by Adults With Congenital Heart Disease

Circulation ◽

10.1161/circ.142.suppl_3.16774 ◽

2020 ◽

Vol 142 (Suppl_3) ◽

Author(s):

Marshall A Taunton ◽

Sheldon Levy ◽

Adrienne H Kovacs ◽

Abigail M Khan

Keyword(s):

Quality Of Life ◽

Congenital Heart Disease ◽

Heart Disease ◽

Health Outcomes ◽

Adverse Childhood Experiences ◽

Congenital Heart ◽

Childhood Experiences ◽

Adverse Childhood ◽

The Impact

Introduction: Adverse childhood experiences (ACEs), such as witnessing domestic abuse or experiencing physical/sexual abuse, are associated with poorer long-term health outcomes, including acquired cardiovascular disease. This study offers the first investigation of ACEs in adults with congenital heart disease (CHD). Methods: In this cross-sectional study, adult CHD outpatients completed the ACE Questionnaire, the Relationship Scales Questionnaire, the Perceived Stress Scale, and a 0 - 100 linear analogue scale of quality of life. Total scores on the ACE Questionnaire range from 0 - 10 (a point for each ACE reported) and scores ≥ 4 are associated with poorest health outcomes. We performed correlations, t-tests, and analyses of variance to explore relationships between ACE Questionnaire scores and demographics, medical variables, and other survey scores. Results: A total of 100 patients were enrolled in the study (40 ± 13 years; 60% female). Ninety percent had defects of moderate or great complexity and 79% were categorized as American Heart Association anatomy + physiology stage B, C or D (i.e., some degree of symptoms and/or functional impairment). Total scores on the ACE Questionnaire ranged from 0 - 9, with a mean of 2.6 ± 2.5; 30% reported ≥ 4 ACEs. The most frequently reported ACEs were parental divorce (46%), emotional abuse (42%), and parental substance abuse problem (32%). ACE Questionnaire scores did not differ as a function of age, sex, defect complexity, or anatomy + physiology stage. However, total ACE score was significantly correlated with all 4 relationship styles (secure, preoccupied, dismissive and fearful; p-values < 0.05). Quality of life scores were lower among those with elevated ACEs, although this did not reach statistical significance (69 vs. 76, p = 0.07). Conclusion: It is well accepted that adults with CHD face many health-related challenges throughout their lives. This study serves as an important reminder to providers that many patients will also experience other significant (and potentially traumatic) stressors in childhood. Further research is needed to determine whether the impact of ACEs on adults with CHD extends beyond relationship and stress outcomes and also includes cardiac morbidity and mortality.

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