Longitudinal development of psychopathology in an adult congenital heart disease cohort
Introduction
Surgical intervention for congenital heart disease (ConHD) has been possible since the late 1950s. Today, due to increased survival rates for ConHD patients, health care professionals are dealing with a new and growing group of patients, namely adults with ConHD. In order to meet the needs of this overall first generation of surviving adults with ConHD, more knowledge about the behavioral and emotional problems in this group should be provided.
Children and adolescents with ConHD are reported to be at a higher risk for behavioral and emotional problems in comparison with peers from reference groups. Previous studies reported increased feelings of anxiety and inferiority, elevated impulsiveness [1], elevated levels of emotional and behavioral problems [2], [3] and more medical fears [4] in children and adolescents with ConHD compared to normative groups.
Unfortunately, very little is known about how behavioral and emotional problems of children and adolescents with ConHD develop into adulthood. In a 25-year follow-up Brandhagen et al. [5] found more psychological distress in a cohort of adults with ConHD than in a reference group. Utens et al. [6] found little differences between mean problems scores of a sample of ConHD adults and a normative group. Differences found were limited to only two specific problem areas, namely somatic complaints and strange thoughts and behaviors. In both studies, no relation was found between the severity of the cardiac defect and the level of psychopathology. Cox et al. [7] found a low prevalence of psychopathology in ConHD adults, using orthopedic patients as a reference group. Differences in sample size, sample composition with regard to the type of ConHD, response rate and assessment procedures might explain these diverging findings. Although some studies identified predictive factors that determine long-term psychosocial wellbeing in ConHD patients, such as maternal anxiety and pampering [8], age at time of operation [9], number of heart operations and deep hypothermic circulatory arrest [6], no earlier follow-up study has been performed using repeated measurements from adolescence into adulthood to examine the individual course of psychopathology in ConHD adults.
This study is part of a multidisciplinary study which provides longitudinal psychological and medical data, of patients with ConHD, 20–32 years after their first heart operation. At the first follow-up, which took place in 1989–1991, children and adolescents with ConHD showed significantly more behavioral and emotional problems than peers from reference groups, at least nine years after cardiac surgery [3]. For the present follow-up study, 20- to 32-year-olds of the five largest diagnostic groups of the same cohort of (meanwhile all adult) patients with ConHD were examined concerning emotional and behavioral problems, using instruments parallel to those of the first follow-up. The present status, as well as the continuity and change of psychopathology, as reported by patients themselves and by a significant other, will be described.
The aims of this study are:
- 1.
To compare the level of emotional and behavioral problems of adult (20–32 years) patients operated for ConHD with that of a normative group of similar age.
- 2.
To determine the development of psychopathology in patients operated for ConHD from adolescence into adulthood and from early adulthood into later adulthood.
- 3.
To identify the role of cardiac diagnosis, sex, age and different informants in this process.
Section snippets
Inclusion criteria
During the first follow-up (Time 1) of this study, which took place in 1989–1991, all consecutive patients who underwent their first open heart surgery for congenital heart disease between 1968 and 1980 in the Erasmus Medical Center Rotterdam, and who were younger than 15 years at the time of surgery, were eligible. This population is described in detail elsewhere [3].
The present follow-up (Time 2) took place in 2000–2001. The target population consisted of the 498 patients of the first
Proportions of problem adults
Table 1 shows the proportions of individuals in the ConHD patient sample and reference group, who scored in the deviant range of the YASR (self-reports) or the YABCL (other-informant-reports) at Time 2. The 90th percentiles of the cumulative frequency distributions of the total problem scores obtained for the reference group were chosen as cut-offs, above which individuals scored in the deviant range [19]. For both sexes, two age categories (20–27 and 28–32 years) were formed based on the
Level of psychopathology in the patient sample compared to the reference group
Both patients' (YASR) and significant others' (YABCL) reports showed significant greater proportions of individuals who scored in the deviant range in the total ConHD patient sample versus the reference group. Comparing the mean scores of all separate scales between the patient sample and reference group however, revealed only small differences on the other-informant-reports, and hardly any differences on the self-reports. The only significant difference found on the self-reports, namely higher
Acknowledgements
We gratefully acknowledge the kind cooperation of all patients, who participated in the study; without them this study would not have been possible. Also, we acknowledge Dr. J. van der Ende for his advise in statistical analyses and Mrs. W. van der Bent for her support in the data collection. This study was financially supported by the Netherlands Heart Foundation (No. 99.033).
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