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ORIGINAL ARTICLES |
From the Social Work Department (M.C., D.M.), Rambam-Health Care Campus, Haifa, Israel; Pediatric Cardiology (H.L., A.L.), Meyer Childrens Hospital, Rambam-Health Care Campus, Haifa, Israel; School of Social Work (M.C.), Faculty of Social Welfare and Health Studies, Haifa University, Israel; Bruce Rappaport Faculty of Medicine (A.L.), Technion, Haifa, Israel.
Address correspondence and reprint requests to Avraham Lorber, Pediatric Cardiology, Meyer Childrens Hospital, Rambam-Health Care Campus, Haifa, Israel. E-mail: a_lorber{at}rambam.health.gov.il
| ABSTRACT |
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Methods: Ninety adolescents (aged 12 to 18 years with congenital or acquired heart disease) and 87 controls completed the HRQoL (TAAQOL-CHD), Center for Epidemiologic Studies Depression scale, and Rosenberg self-esteem questionnaires. Relevant medical details were collected. The patients and their parents were asked to rate their perceived severity of heart disease.
Results: Adolescents with severe heart disease reported higher levels of depressed mood and lower self-esteem than did adolescents with moderate and mild heart disease and age-matched healthy controls. Adolescents with severe heart disease also reported worse HRQoL than those with moderate and mild disease. According to the multiple regression analysis, 44% of variance of HRQoL was explained by the study variables. Disease severity alone explained 11% of the variance, but when entered with the other study variables, depressed mood, self-esteem, and adolescents perceived severity of disease were the only significant contributors to the explained variance of HRQoL. An exploratory mediation analysis, using the Sobel test, was therefore applied, and it showed that depressed mood and perceived disease severity, but not self-esteem, mediated the relationship between disease severity and HRQoL.
Conclusions: Lower HRQoL was found in adolescents with severe heart disease. Psychosocial factors have a significant effect on the psychological state of adolescents, and they should be addressed and treated.
Key Words: adolescents health-related quality of life heart disease depressed mood self-esteem perceived disease severity
Abbreviations: HRQoL = health-related quality of life.
| INTRODUCTION |
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Living with heart disease has many psychosocial consequences for adolescents (3). Previous studies reported higher levels of psychological distress and behavioral problems (4–7) than those of healthy adolescents. Other studies reported lower levels of psychological distress, or no difference compared with control groups (8,9).
These contrasting reports raise the question of what factors are related to higher psychological distress and worse psychosocial adjustment in adolescents with heart disease. Possible related factors may be cardiac status, health-related quality of life (HRQoL), and personal factors such as self-esteem or cognitive perceptions of disease severity.
Several studies found that increased severity of cardiac problems was associated with either higher psychological distress and behavioral problems (6,7,10,11) or no association between severity of disease and psychological or behavioral parameters (4).
HRQoL focuses on functional limitations and their emotional impact (12). Most studies reported that adolescents with heart disease have a reduced HRQoL compared with healthy adolescents (3,13) even after surgical correction for congenital heart disease (14). On the other hand, Fekkes et al. (12) found similar and even better HRQoL reported by adolescents and adults with minor congenital heart disease than that of healthy controls. Other studies found that the HRQoL of adolescents with heart disease was not related to the severity of disease (3). Participation in sports, which is an aspect of HRQoL, was found to be related to higher self-esteem (15,16) but not to the severity of disease (15).
Personal characteristics, such as self-esteem, and similar constructs like self-concept and self-perception, are considered a personal resource that facilitates positive perceptions of stressful life situations (17) and reduced psychological distress (18–21). Studies found lower self-esteem or self-concept in patients with heart disease (10,22,23), although an improvement in self-esteem was reported in children and adolescents after heart surgery (24).
Cognitive perceptions of personal situations and the meaning ascribed to them are subjective and differ among individuals (17,25). The more negative or severe the perceptions are, the higher the psychological distress found in individuals with various diseases (17,26,27) and in adolescents and adults with heart disease (28). Rietveld and colleagues (28) reported that negative perceptions, but not severity of disease, were associated with higher distress and worse psychological adjustment.
Another factor that affect coping with illness is ethnicity, although it was not previously assessed in relationship to adolescents with heart disease. Previous studies suggested that the more conservative Arab society tends to perceive illness and disability as Gods will (29–31), which may promote acceptance and adjustment but may also increase passivity and impede active coping.
Studies on adolescents with heart disease are sparse, and often assess adolescents and adults together (28) or adolescents with young children (3). The goals of this study were a) to assess the level of HRQoL, depressed mood, and self-esteem in adolescents with different levels of disease severity (severe, mild, low) and in comparison with age-matched controls; b) to identify relationships of cardiac and demographic variables, depressed mood, perceptions of disease severity, and self-esteem, with HRQoL of adolescents with heart disease; and c) to assess if perceived severity of heart disease, depressed mood, and self-esteem may mediate the relationship between severity of disease and HRQoL.
| METHOD |
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The adolescents and their parents gave informed consent. The adolescents answered the questionnaires, their parents were asked to rate their perception of disease severity, and relevant medical data were collected. The control group consisted of 39 Jews and 48 Arab healthy adolescents. The control group constituted a convenience sample; they were approached in their schools; and they and their parents gave informed consent. The study was approved by the hospitals Ethics Committee.
Questionnaires
Demographic data included age, gender, religion, fathers education and employment, and religiosity. HRQoL was measured in the study group only by the Netherlands Organisation for Applied Scientific Research Academic Medical Centre Adult Quality of Life-Congenital Heart Disease questionnaire (TAAQOL-CHD) (32), a cardiac-specific module of the generic HRQoL instrument. It contains three subscales: complaints or limitations during the previous month, worries during the previous month, and burden of the medical examinations. Only the 9-item complaints or limitations subscale was used (e.g., shortness of breath after strolling, feeling dizzy, looking pale). The other two were not used because of the length of the questionnaire and because these variables were not directly assessed in the present study. Each item consists of two questions. First, the frequency of occurrence of each complaint or limitation during the last month is scored on a 3-point scale (1 = never; 2 = occasionally; 3 = often). If such problem occurred, the degree it bothers the respondents is assessed on a 4-point scale (from 1 = not at all to 4 = very much). The two scores are multiplied, and the final scores range from 1 to 12; the higher the score, the worse is the HRQoL. Convergent and discriminant validity showed satisfactory coefficients (32). In the present study, the internal reliability (Cronbachs
) was 0.82.
Self-esteem was assessed by the Rosenberg self-esteem scale (33), a 10-item measure of positive and negative aspects of self-esteem. The items were rated on a 4-point response scale (0 = strongly disagree to 4 = strongly agree). Internal reliability (Cronbachs
) was 0.60.
Depressed mood was assessed by the Center for Epidemiologic Studies Depression scale (34). A short (10-item) version was used; its validity was confirmed in previous studies (35); and it was found suitable for adolescents (36). Answers ranged from 1 (not at all) to 5 (very much). Internal reliability (Cronbachs
) was 0.82.
Degree of engagement in sports activity, watching TV, and playing/ chatting on the computer, and perceived school achievements were assessed in comparison with their peers. The adolescents were asked to rate whether they engage in each activity more than their peers (=1), the same (=2), or less (=3). They were asked to rate their school achievements in the same way.
Statistical Methods
Descriptive statistics were used to examine the characteristics of the sample.
2 analysis was used to assess differences in nominal variables. Analysis of variance was used to assess differences between the study group, according to severity, and the control groups, followed by post hoc Scheffé test to identify differences between pairs of groups. Correlations between study variables were assessed by Pearson and Spearman analyses. Multivariate regression analysis was used to assess the contribution of study variables to explain variance of HRQoL of the study group. Independent variables were entered by means of the enter method in the following order: age, gender, ethnicity, severity of disease, perceived severity, depression, and self-esteem. The independent variables were entered simultaneously without exclusion of variables from the model. The Sobel test (37) was used to assess possible mediation between disease severity and quality and life by depressed mood, perceived severity of disease, and self-esteem. For the regression and mediation analysis, n = 90 proved sufficient according to the formula suggested by Green (38), using Cohens (39) calculations of sample size based on power analysis, for large effect size (R2
0.26). Levels of significance are shown in the tables. A probability level of 0.05 was accepted as significant. All statistics are two-tailed analysis.
| RESULTS |
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Health-Related Characteristics of Adolescents With Heart Disease
Table 2 shows the distribution of disease-related variables in adolescents with heart disease. Seventy-nine of the 90 adolescents had congenital heart disease, 19 were cyanotic, and 60 were acyanotic. The acyanotic patients had predominantly moderate and mild disease. An additional 11 adolescents had acquired heart disease: rheumatic disease (n = 6), Kawasaki disease (n = 1), post myocarditis dilated cardiomyopathy (n = 1), and cardiac dysrhythmia (n = 3).
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Sixty adolescents had had surgery. The post surgery time varied. Adolescents with severe heart disease reported the worst HRQoL, and those with mild disease reported the best HRQoL (Table 2). The same differences between the three groups were found for perceived severity of the disease by the adolescents and their parents.
Health-related characteristics of adolescents with acquired and congenital heart disease were compared. There was no significant statistical difference between them in the percentage of adolescents with a pacemaker, but fewer adolescents with acquired heart disease had undergone surgery (18.2% versus 73.4% of the adolescents with congenital disease;
2 (1) = 13.26; p < .001) and more of them received medications (90.9% versus 34.2%;
2 (1) = 12.84; p < .001). However, adolescents with acquired and congenital heart disease reported similar levels of HRQoL (p > .05).
Psychosocial Characteristics of the Study and Control Groups
Table 3 shows that the adolescents with severe disease were significantly more depressed and reported lower self-esteem than adolescents with moderate and mild disease and healthy adolescents, whereas no significant differences in levels of depressed mood and self-esteem were found between adolescents with moderate and mild disease and healthy adolescents. Adolescents with severe and moderate disease participated significantly less in sports than did adolescents with mild disease and healthy adolescents. Adolescents with mild disease and healthy adolescents were similar in their participation in sports. Time spent watching TV, computer games, or chatting was similar across groups, and no significant differences were evident in school achievements.
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Relationships Between Study Variables
Table 4 shows the correlation between the study variables. Age, gender, and ethnicity were not significantly associated with other study variables, except for sports activities, which were significantly lower for the Arab adolescents. Severity of disease was significantly and positively associated with adolescents' and parents' perceptions of disease severity, and negatively associated with participation in sports. Also, higher disease severity was associated with worse HRQoL, depressed mood, but not with self-esteem. Perceived severity by adolescents and parents was associated with lower participation in sports, worse HRQoL, and higher depressed mood, but only adolescents' perceived severity was associated with lower self-esteem.
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Multiple regression analysis was conducted to assess the contribution of demographic and health-related variables, depressed mood, and self-esteem for the explained variance of HRQoL of adolescents with heart disease. According to the regression model, 44% of the variance of HRQoL was explained by the study variables (adjusted R2 = 0.39; F(7,81) = 9.72; p < .001). Perceived severity of the disease, higher depression, and lower self-esteem were significantly related to HRQoL. In the full regression model, disease severity was not significantly associated with HRQoL, but when tested as sole predictor of HRQoL, it explained 11% (r = 0.32; ß = 0.32; t = 3.21; p < .001) of its variance. In addition, adolescents' perceived severity and depressed mood correlated with HRQoL (ß = 0.54; t = 6.02; p < .0001 and ß = 0.47; t = 4.94; p < .0001). Disease severity correlated with perceived severity (ß = 0.39; t = 3.93; p < .0001) and with depressed mood (ß = 0.33; t = 3.24; p < .001), so they could be possible mediators of the association between disease severity and HRQoL. When disease severity and depressed mood were entered as predictors of HRQoL, with R2 = 0.27 (F(2,87) = 16.14, p < .0001), ß for disease severity fell to 0.24 (t = 2.54; p < .05), and ß for depressed mood was 0.42 (t = 4.45; p < .0001). The Sobel test (35) showed Z = 3.32 (p < .0001). The same calculations were applied to disease severity and perceived severity, with R2 = 0.31 (F(2,87) = 19.30; p < .0001), and then ß for disease severity fell to 0.14 (t = 1.40; p > .05), and ß for perceived severity was –0.49 (t = –5.04; p < .0001). The Sobel test showed Z = 3.14 (p < .001). Accordingly, depressed mood and perceived disease severity were factors mediating the effects of disease severity on HRQoL. Self-esteem was also correlated with HRQoL (ß = –0.35; t = –3.50; p < .01) but was not significantly correlated with severity of disease (ß = –0.07; t = –0.64; p > .05) and, hence, did not mediate the association between disease severity and HRQoL.
| DISCUSSION |
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The finding that adolescents with moderate and mild heart disease were similar in levels of depressed mood and self-esteem to the healthy adolescents, in contrast to adolescents with severe heart disease, supports previous findings (7,10,11). However, the present study pointed to the major role of depressed mood, perceived disease severity, and self-esteem, but not the severity of disease itself, as predictors of HRQoL. These findings are in accordance with studies on adolescents with heart disease (3) and on adolescents and adults with other chronic health problems (40). The possible mediating role of depressed mood and perceived severity of disease again accords with the cognitive theories that regard cognitive perceptions and psychological reaction as a link between disease consequences and adjustment (17,41).
The present study provides an exploratory mediation effect in adolescents with heart disease, which may make an important contribution to our understanding of the processes of coping with heart disease in adolescents. Although self-esteem was associated with HRQoL, it was not affected by disease severity but rather by its subjective perception.
Another finding of the present study shows that adolescents with severe and moderate heart disease are less active in sports, which is in accordance with medical recommendations. In keeping with reports on the benefit of sports activities to physical and psychological health of adolescents, an effort should be made to adjust exercise activity, rather than restricting activities.
The limitations of the present study should be noted. Although the size of the study and control groups was large enough to produce sufficient power analysis, larger groups could contribute to the generalizability of study results. Also, in the absence of data on rate of depression in the Israeli adolescent population, the degree to which the present control group is representative of adolescents in Israel is not known. However, the demographics of the sample seem representative of the Israeli adolescent population. Another weakness of the study is that the surgery-related variables could not be assessed in the regression and mediation analysis due to relevance only to some of the study participants. In addition, because adolescence is a time of immense changes and instability, a longitudinal design could improve information regarding the study variables and identify critical time points in the passage from childhood to early and then to late adolescence. A longitudinal study would also facilitate a more definitive test of the mediation hypothesis. Multicenter collaboration is a means of increasing the number of participants and further expanding our knowledge and understanding of the emotional and psychological aspects of heart disease. Furthermore, measures of sports and school achievements are limited in the present study, and a more thorough investigation of these variables should be conducted in future studies.
Nevertheless, the study bears important implications for the treatment of adolescents with heart disease, particularly those more severely affected. Psychosocial interventions should start during childhood, with children and parents; such interventions would reinforce the children's coping abilities and prepare them to contend successfully with the challenges they will later confront and enhance their HRQoL as adolescents.
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DOI:10.1097/PSY.0b013e318051542c
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