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Depression in pediatric patients before and 1 year after heart or heart-lung transplantation
QUALITY OF LIFE
Depression in Pediatric Patients Before and 1 Year After Heart or Heart–Lung Transplantation Jo Wray, PhD and Rosemary Radley-Smith, FRCP Background: Although depression is a significant psychiatric condition of childhood and adolescence and those with a chronic medical problem are at increased risk for developing depression, the prevalence of depression in children and adolescents undergoing heart and heart–lung transplantation has not been addressed. However, the role of psychosocial factors, such as mood state, in determining outcome is being increasingly acknowledged. Methods: The Mood and Feelings Questionnaire, a rating scale of depressive symptoms, was administered to 58 children before transplantation and to 46 children after transplantation, with 24 completing both assessments. To compare children’s and parents’ ratings, both child and parent versions, with corresponding items, were utilized. Results: Pre-transplant, the mean score on the child measure was significantly higher (p ⬍ 0.001) than that on the parent measure, with 24% and 21% on the child and parent measures, respectively, obtaining scores indicative of depression. Parents of children with acquired heart disease rated their children as having significantly more depressive symptoms than parents of children with congenital heart disease or cystic fibrosis. After transplantation, there was a reduction in mean scores on both the child and parent questionnaires and the pre-transplant differences between the different diagnostic groups were no longer apparent. Over time the numbers obtaining scores indicative of depression decreased by approximately 50%. Conclusions: Transplantation is associated with a reduction in the prevalence of depressive symptomatology. The role of original diagnosis in the manifestation of depression both before and after transplantation requires further investigation. J Heart Lung Transplant 2004;23:1103-10.
Depression is now widely recognized as a significant psychiatric condition of childhood and adolescence.1 Estimates of the prevalence of major depressive disorder suggest rates of ⬍3% in school-aged children,2 rising to between 3.6% and 6% in adolescents.2– 4 However, many more children and adolescents experience depressive symptoms that do not amount to diagnostic criteria for major depressive disorder,1 and the inconsistent prevalence rates of depression reported for the general population have been attributed to variation in definitions and the measures utilized by different studies.5 Research with chronically ill children indicates that such children are at a slightly increased risk for depressive symptoms but most are not clinically depressed.6 However, among hospitalized pediatric patients, susa
From the Royal Brompton and Harefield NHS Trust, Pediatric Surgical Unit, Harefield Hospital, Harefield, Middlesex, UK. Submitted June 4, 2002; revised August 13, 2003; accepted August 13, 2003. Reprint requests: Jo Wray, PhD, Pediatric Surgical Unit, Harefield Hospital, Harefield, Middlesex UB9 6JH, UK. Telephone: 01895828761. Fax: 01895-828554. E-mail: [email protected] Copyright © 2004 by the International Society for Heart and Lung Transplantation. 1053-2498/04/$–see front matter. doi:10.1016/ j.healun.2003.08.018
pected depression or suicidal ideation constitutes the single most common reason for mental health referrals by the child’s physician.7,8 Disease severity is inconsistently related to depressive symptoms and factors such as gender, age and time since diagnosis are generally unrelated to symptoms, although there is a trend in many studies for more depressive symptoms among older children.9,10 Higher rates of depressive symptoms are associated with parent, rather than child, ratings.6 Few studies, however, utilize both child and parent ratings. Although there are few studies of depression in children with congenital heart disease (CHD), children with cyanotic disorders demonstrate more depressive symptoms than those with acyanotic disorders11 and depression scores are highest among those with the most severe disease and are positively related to the number of cardiac catheterizations, operations and clinic visits experienced by the children.12 Children with cardiomyopathy (CM) have not been systematically evaluated. Heart or heart–lung transplantation is now the treatment of choice for increasing numbers of children and adolescents with end-stage heart or lung disease. Although there is an increasing focus on the psychologic impact of transplantation the study of depression in this 1103
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Table 1. Characteristics of the Sample
Mean age (years) SD Range Number of girls Diagnosis CHD CF CM PPH Number who had heart transplants Number who had heart–lung transplants
Pre-transplant (n ⫽ 58) 12.3 2.4 8.0–16.8 26 (45)
Post-transplant (n ⫽ 46) 13.2 2.6 8.1–17.3 23 (50)
Matched Sample (n ⫽ 24) Pre-transplant 12.2 2.1 8.0–14.9
Post-transplant 13.6 2.3 9.8–16.6 9 (38)
32 (55) 12 (21) 11 (19) 3 (5) N/A
15 (33) 11 (24) 19 (41) 1 (2) 23 (50)
8 (33) 6 (25) 9 (38) 1 (4) N/A
11 (46)
N/A
23 (50)
N/A
13 (54)
Percentage values given in parentheses. CHD, congenital heart disease; CF, cystic fibrosis; CM, cardiomyopathy; PPH, primary pulmonary hypertension.
patient group has been largely neglected. To address this deficit, children and adolescents undergoing heart or heart–lung transplantation at our institution were assessed as part of a larger study evaluating the psychologic impact of transplantation on the child and family, with the following objectives: ● ● ● ●
To assess the prevalence of depression before and 12 months after transplantation. To compare children’s and parents’ ratings of depressive symptoms. To monitor change in ratings of depression over time. To examine the effects of initial diagnosis on the reporting of depression.
METHODS Patients Between October 1988 and November 1993, children and adolescents who were assessed and accepted onto the waiting list for heart or heart–lung transplantation at Harefield Hospital were approached to participate in a study looking at the psychologic impact of transplantation on children and their families. Children and families were included in the study if they were domiciled in the UK or Ireland and spoke English as their first language. This study focuses on those patients between 8 and 17 years of age. Within the study period, 65 children and adolescents who met the inclusion criteria for this part of the study were admitted to the pediatric unit at Harefield Hospital for transplant assessment, 58 of whom were recruited into the study at the time of acceptance onto the waiting list. Of the remaining patients, 6 were too ill to undergo any psychologic testing and 1 was subsequently not accepted for transplant. Forty-six patients were assessed 1 year after heart (n ⫽ 23) or heart–lung (n ⫽ 23) transplantation, with 24 children completing both the pre- and post-trans-
plant assessments. Of the 58 seen pre-transplant, 35 were transplanted within the study period, 7 of whom died within the first year after transplant and 4 were ⬍1 year post-transplant by the end of the study period and so were not followed-up. Fourteen of the children were still on the waiting list at the end of the study period and another 9 died while on the waiting list. Twentyfour of the 46 children seen 1 year after transplant were also seen pre-transplant. Of the remaining 22 not seen pre-operatively, 9 were transplanted during the 12 months before the study began, 4 were younger than 8 years old when they were put on the waiting list, 5 were accepted for transplant at another hospital and 4 were too sick to be assessed pre-transplant. At 12month follow-up, all 46 patients were clinically well and had returned to age-appropriate activities. Characteristics of the sample are summarized in Table 1. Measures The measure of depression utilized in this study was the 33-item Mood and Feelings Questionnaire (MFQ).13 This questionnaire exists in separate child (MFQ-C) and parent (MFQ-P) versions and was developed to select children and adolescents for an epidemiologic study of depression. The questionnaire, for children 8 to 18 years of age, is based on DSM-III-R14 criteria for major depressive disorder. The MFQ consists of statements with response on a 3-point scale (“true,” “sometimes true” and “not true,” which are scored 2, 1 and 0, respectively), and for this study the statements referred to a period covering the previous 2 weeks. There are no reverse-coded items. Satisfactory reliability and validity have been reported15 and the psychometric properties of the MFQ have been comprehensively tested, using methods such as received operating characteristic
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(ROC) analysis,16 which indicates that the MFQ is a valid instrument for detecting DSM-III-R depression. Cut-off scores of 27 on the MFQ-C and 21 on the MFQ-P were used to identify children likely to be depressed.16 To our knowledge, the measure chosen for this study has not been used in other studies of chronically ill children. The reasons for choosing the MFQ were: first, that much MFQ data have been collected from general population samples in the UK4,17; second, that the MFQ was specifically designed to identify DSM-III-R depression; and third, that it exists in parallel child and parent forms. The other questionnaire with the closest overlap with DSM-III-R symptomatology is the Child Depression Inventory (CDI),18 which has been used previously with chronically ill children. However, the CDI requires children to remember and compare 3 statements at a time and, for this reason, it has been suggested that the MFQ makes fewer demands than the CDI on the child.19 This was believed to be an important consideration, not only because ease of use for children and parents was likely to improve adherence, but also because our patients, particularly before transplant, were chronically ill and often less able to cope with the cognitive demands of a questionnaire such as the CDI. Children and adolescents were asked to complete the child version of the MFQ before and 1 year after transplantation as part of a comprehensive battery of tests. Parents were also asked to complete the parent version on each test occasion. Completion rates were satisfactory, with 91% of children and 93% of parents completing the measure pre-transplant and 100% of children and 83% of parents completing the task after transplant. In addition to completing the questionnaires, parents were also seen for a semi-structured interview during which information was collected on demographic, social and medical variables. The study was given institutional approval and all patients and their families gave informed consent to take part. Statistical Analysis The chi-square test was used for comparison of categoric variables and the Mann–Whitney U-test was used for comparison of continuous variables. Matched-pair data were compared with the Wilcoxon signed-rank test. All correlation data were analyzed using Spearman correlation coefficients. RESULTS Pre-Transplant Assessment Table 2 shows the mean scores and numbers obtaining scores indicative of depression on the MFQ-C and MFQ-P. Overall, 18 children (31%) had scores above the cut-off point on the parent and/or child questionnaire. Although MFQ-C scores were higher than MFQ-P scores
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for both the depressed and non-depressed samples (depressed sample [defined as children who scored above the cut-off on either the child and/or parent questionnaire]: MFQ-C, mean 30.50; MFQ-P, mean 23.88), the difference reached significance only for the non-depressed sample (MFQ-C, mean 14.26; MFQ-P, mean 10.03; Z ⫽ ⫺3.303 and p ⫽ 0.001). Effects of Age. There was no significant difference between the mean ages of the depressed sample and non-depressed sample (mean for depressed sample: 12.52 years, SD 2.56 years; mean for non-depressed sample: 12.49 years, SD 2.57 years). Division of the sample into 2 more clinically meaningful age bands of 8.0 to 12.9 years and 13.0 to 16.8 years resulted in no significant difference for depression scores between the 2 groups. Parent–Child Agreement. Overall, the correlation coefficient for parent and child total MFQ scores was 0.381 (p ⫽ 0.007), with correlations on the individual matched items significant for 16 of the 33 items. There was also significant agreement between child and parent ratings of whether or not the child was depressed (r ⫽ 0.503, p ⬍ 0.001). The parent and child total scores did not correlate significantly in any of the diagnostic groups or for boys or girls. Children Not Followed-up. There were no significant differences in MFQ-P and MFQ-C mean scores between the 34 patients who were not followed-up and the 24 who were seen after transplant or between those patients who died on the waiting list and those who survived to transplant or were still on the waiting list. Post-Transplant Assessment Results of the post-transplant assessment are given in Table 2. Overall, 6 children (13%) obtained scores above the cut-off on the parent and/or child measure. Although MFQ-C scores were higher than MFQ-P scores for both the depressed and non-depressed samples (depressed sample: MFQ-C, mean 28.33; MFQ-P, mean 26.20; non-depressed sample: MFQ-C, mean 7.96; MFQ-P, mean 6.36) these differences were not significant. Effects of Age. The mean age of the depressed children did not differ from that of the non-depressed children (mean for depressed sample: 11.98 years, SD 2.70 years; mean for non-depressed sample: 13.30 years, SD 2.57 years). Division of the sample into 2 more clinically meaningful age bands of 8.1 to 12.9 years and 13.0 to 17.3 years resulted in no significant differences in depression scores between the 2 groups. Parent– child Agreement. Overall, the correlation coefficient for parent and child total MFQ scores was 0.441 (p ⫽ 0.006), with correlations on the individual matched items significant for 6 of the 33 items. Division
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Table 2. Pre- and Post-Transplant Results: Whole Sample Pre-transplant
Whole group Mean score SD Number scoring above Boys Mean score SD Number scoring above Girls Mean score SD Number scoring above CHD Mean score SD Number scoring above CF Mean score SD Number scoring above CM Mean score SD Number scoring above PPH Mean score SD Number scoring above Heart recipients Mean score SD Number scoring above Heart–lung recipients Mean score SD Number scoring above
Post-transplant
MFQ-C
MFQ-P
MFQ-C
MFQ-P
cut-off
18.96a 10.93 13 (24)
14.11a 10.00 11 (21)
10.61 10.83 4 (9)
8.79 9.01 4 (11)
cut-off
18.41b 9.61 5 (17)
14.03b 8.53 6 (21)
8.09c 9.03 1 (4)
6.56d 8.80 2 (11)
cut-off
19.60e 12.46 8 (32)
14.21e 11.73 5 (21)
13.13c 12.05 3 (13)
10.80d 8.94 2 (10)
cut-off
18.79 10.69 6 (21)
11.70f 7.83 4 (13)
14.80 11.86 3 (20)
10.45 11.56 2 (18)
cut-off
18.67 10.61 4 (33)
12.91b 6.88 2 (18)
8.09 4.46 0 (0)
7.50 8.86 1 (10)
cut-off
20.90 14.04 3 (30)
24.60b 12.76f 5 (50)
9.26 12.14 1 (5)
8.63 7.78 1 (6)
4.50 3.54 0 (0)
1.00
6.00
cut-off
15.33 4.51 0 (0)
0 (0)
0 (0)
cut-off
— — —
— — —
11.22 12.77 2 (9)
9.63 8.67 2 (11)
cut-off
— — —
— — —
10.00 8.72 2 (9)
7.95 9.50 2 (11)
Percentage values given in parentheses. MFQ-C, Mood and Feelings Questionnaire (child version); MFQ-P, Mood and Feelings Questionnaire (parent version); CHD, congenital heart disease; CF, cystic fibrosis; CM, cardiomyopathy; PPH, primary pulmonary hypertension. a p ⬍ 0.001; bp ⬍ 0.05; cp ⫽ 0.051; dp ⫽ 0.076; ep ⬍ 0.01; fp ⬍ 0.005.
of the group according to diagnosis yielded no significant correlations between parent and child total scores for CM patients, but for the CHD and CF groups the correlations were significant (r ⫽ 0.638, p ⫽ 0.035 and r ⫽ 0.732, p ⫽ 0.016, respectively). Although correlations between MFQ-C and MFQ-P scores were not significant for heart recipients, the association was significant for heart–lung patients (r ⫽ 0.464, p ⫽ 0.046). Correlations of parent and child total scores were not significant for boys or girls. Children not seen pre-transplant. There were no significant differences in post-transplant MFQ-C and MFQ-P mean scores between the 24 patients who were
seen before transplant and the 22 not seen before transplant. Changes Over Time Twenty-four children and adolescents were assessed before and 1 year after transplant and there was a significant reduction on both the MFQ-P and MFQ-C total mean scores over time (Table 3). Although the overall numbers of children obtaining scores above the cut-off fell over time, the changes were not significant either for the whole group or for the diagnostic subgroups. There was a significant correlation between pre-transplant MFQ-C and post-transplant MFQ-C scores
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Table 3. Matched Sample: Pre- and Post-transplant Results Pre-transplant
Whole group Mean score SD Number scoring above Boys Mean score SD Number scoring above Girls Mean score SD Number scoring above CHD Mean score SD Number scoring above CF Mean score SD Number scoring above CM Mean score SD Number scoring above PPH Mean score SD Number scoring above Heart recipients Mean score SD Number scoring above Heart–lung recipients Mean score SD Number scoring above
Post-transplant
MFQ-C
MFQ-P
MFQ-C
MFQ-P
cut-off
20.33a 11.38 6 (29)
17.10b 12.34 8 (33)
10.81a 11.91 2 (8)
8.25b 9.07 2 (10)
cut-off
20.08c 9.38 3 (23)
14.83d 10.18 4 (27)
6.46c 5.85 0 (0)
5.58d 7.50 1 (8)
cut-off
20.75 14.80 3 (38)
20.50 15.13 4 (44)
17.88 15.95 2 (22)
12.25 10.21 1 (13)
cut-off
18.00 7.87 1 (17)
10.17 3.97 1 (13)
13.50 11.57 1 (13)
9.50 12.41 1 (17)
cut-off
20.17e 10.63 2 (33)
12.80 7.53 2 (33)
7.50e 2.67 0 (0)
4.00 4.42 0 (0)
cut-off
23.38f 14.75 3 (38)
26.88g 13.27 5 (56)
12.50f 16.49 1 (11)
10.25g 9.08 1 (13)
11.00
2.00
1.00
6.00
cut-off
0 (0)
0 (0)
0 (0)
0 (0)
cut-off
22.80h 14.14 4 (40)
25.44i 13.14 6 (55)
13.70h 15.08 1 (9)
10.11i 8.51 1 (11)
cut-off
18.09j 8.22 2 (18)
10.27 6.13 2 (15)
8.18j 7.95 1 (15)
6.73 9.62 1 (10)
Percentage values given in parentheses. MFQ-C, Mood and Feelings Questionnaire (child version); MFQ-P, Mood and Feelings Questionnaire (parent version); CHD, congenital heart disease; CF, cystic fibrosis; CM, cardiomyopathy; PPH, primary pulmonary hypertension. a z ⫽ ⫺3.408, p ⫽ 0.001; bz ⫽ ⫺3.030, p ⫽ 0.002; cz ⫽ ⫺3.181, p ⫽ 0.001; dZ ⫽ 2.918, p ⫽ 0.004; ez ⫽ ⫺1.992, p ⫽ 0.046; fz ⫽ ⫺2.383, p ⫽ 0.017; g z ⫽ ⫺2.524, p ⫽ 0.012; hz ⫽ ⫺2.499, p ⫽ 0.012; iz ⫽ ⫺2.668, p ⫽ 0.008; jz ⫽ ⫺2.401, p ⫽ 0.016.
(r ⫽ 0.527, p ⫽ 0.014), but not between pre- and post-transplant parent ratings. DISCUSSION We believe that this is the first reported prospective study focusing on the occurrence of depression and depressive symptomatology in children and adolescents undergoing heart or heart–lung transplantation. Furthermore, use of a questionnaire that offers parallel versions for child and parent provides ratings of depressive symptomatology from more than one source—the lack of which has been a criticism of much of the existing work on depression in chronically ill children.6
Before transplantation, the mean scores obtained on both the MFQ-C and MFQ-P did not differ significantly from normative data collected from a community sample or from the mean score of non-depressed patients in a clinic sample.1 The proportion of children obtaining scores above the cut-off was similar to the prevalence of depression reported for a group of 30 patients awaiting heart or heart–lung transplantation,20 and was within the range quoted for other groups of chronically sick children.6 However, the proportion of children obtaining scores above the cut-off was higher than found in studies of community samples. The higher mean score on the MFQ-C compared with the parent version sup-
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ports other findings for the general population that children report more depressive symptoms than their parents report them to have.21 Children with CHD awaiting heart or heart–lung transplantation have been found to have more cognitive and behavioral problems than those with CF or CM.22 However, in this study, children with CM were rated by parents as having more depressive symptomatology than children with CHD or CF—although there were no differences in the children’s own ratings between the different diagnostic groups. The more recent onset of illness in the CM group, together with parents’ own mental health, are likely explanations for this pattern of results. Overall, there was low agreement between child and parent ratings, although there was a significant correlation on the presence of depression, as determined by employing cut-off scores, which has been found previously in studies of community samples.23 The present study has limitations that must be borne in mind when interpreting the results. In particular, the same patients were not all seen on both test occasions, such that the sample group seen before and after transplant comprised only 24 patients. A number of patients who were assessed died while on the waiting list or did not receive a transplant and a small number died within 1 year of transplantation. Furthermore, a few patients were not 1-year post-transplant within the study period. Of those seen after transplantation, some had been transplanted before the study began or had been accepted for transplantation at another hospital, and so were not assessed by our team, and a small number were too ill to complete the psychologic battery of tests. To exclude all of these patients would not only have diminished the sample size but would also have left a sample unrepresentative of our transplant program’s population and would have resulted in important data being lost. Furthermore, the patients for whom data were collected both before and after transplantation did not differ significantly from the other patients seen at each test occasion. The relatively small sample sizes, particularly when considering the comparisons between the CF, CM and CHD sub-groups, means that some of the findings might be liable to Type II statistical errors. A further potential limitation is that the patients were transplanted several years ago and the data are therefore not “current.” However, we believe that these data provide important information about a topic not previously investigated and that the findings remain pertinent to the care of transplant patients in the current era. After transplantation there was a reduction in both the proportion of patients obtaining scores indicative of depression and in the mean scores on the MFQ-C and MFQ-P. The proportion of children scoring above the
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cut-off was lower than that reported recently for a group of transplant patients, 39% of whom had “some clinical level of depression.”24 In our study, 4 of the 6 patients who scored above the cut-off were subsequently referred for further psychiatric help for management of their depression. Although there were no differences between the diagnostic groups, 3 of the 6 patients had an original diagnosis of CHD, all of whom expressed some degree of disappointment with the transplant. The 2 patients with an original diagnosis of CM who obtained scores above the cut-off, although clinically well, never accepted the transplant. Both patients had problems with body image, became extremely anxious about their health, and felt socially isolated from their peer groups—findings that have also been reported in adolescents with diabetes25 and cancer.26 Although there were no differences between mean scores for boys and girls pre-transplant, girls had higher scores after transplant, with the differences approaching statistical significance. One possible contributory factor is the effects of the drugs on physical appearance—a source of distress for many patients posttransplant, but particularly for girls. We have previously found self-perception to be more negative than ideal self-perception 1 year after transplant,27 with body image and low self-esteem being 2 aspects of concern. Other studies of healthy23 and ill28,29 children have found higher rates of depressive symptomatology in girls, although the relationship between depression and gender is likely to be mediated by other variables such as age and pubertal status. The low levels of agreement between parent and child ratings of depressive symptomatology after transplant is in accordance with findings from other studies,23,30,31 with children reporting more depressive symptoms about themselves than their parents do,16,23 and the suggestion that parents may be relatively insensitive to evidence of affective disturbance in their children. Interestingly, for children with an original diagnosis of CHD and CF, but not CM, correlations between parent and child ratings were significant after transplant. A possible explanation for this discrepancy is that patients with CF or CHD had been diagnosed from infancy and parents were more aware of how their child coped with illness and treatment. For the CM patients, their experience of illness tended to be more limited and parents may have been less aware of their children’s feelings, focusing more on the visible and objective consequences of the transplant. The low levels of agreement also highlight the importance of using multiple informants. A further consideration is the mother’s own mental state and its effect on their completion of the measure. It is well documented that maternal levels of psycho-
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logic functioning influence the mother’s perceptions of her child’s behavior.32,33 A number of parents expressed difficulties coping with their child’s illness and subsequent transplant and the caretaking burdens placed on them. Although based on a small sample, the results focusing on the changes over time provide important information about the impact of transplantation on this group of patients. The significant reduction in mean scores on both the MFQ-C and MFQ-P suggest that, for the majority of patients, the improvement in their physical health results in improvements in their mental health, particularly the occurrence of depressive symptomatology. Before transplantation, patients with CM had the highest mean scores on both the MFQ-C and MFQ-P. There was a significant reduction in both of these scores over time, together with the MFQ-C mean score for the CF patients, but there were no changes in the CHD group. One explanation for these differences is that many of the patients with CM had had a recent onset of illness that proceeded fairly quickly to transplantation. Having been healthy, the sudden and dramatic deterioration in their physical health to a state where they had end-stage heart disease necessitating the life-threatening but potentially life-saving intervention of a transplant had, not surprisingly, resulted in the manifestation of depressive symptoms. One year after transplantation they had regained their physical health and resumed a normal life, albeit with some changes to their daily routine, and the occurrence of depressive symptoms had fallen accordingly. In contrast, those patients with CHD were generally less acutely ill at the time of transplant and were accustomed to living with heart disease. After transplantation, they found it more difficult to cope with “normal”— having never known it in many cases— and at the same time some patients were trying to come to terms with unfulfilled expectations. In terms of depressive symptomatology, there were few changes. Patients with CF generally understood that transplantation would not cure them of their CF, but rather would improve their respiratory symptoms. By 1 year posttransplant these patients were physically far less restricted than previously and were able to participate in age-appropriate activities, including sports. Their expectations about what transplantation would offer were more realistic than in the CHD group, and their previous experience of medical treatments resulted in better adaptation to the demands of transplantation. There was a significant correlation between pre- and post-transplant scores on the MFQ-C but no correlation between parent ratings before and after transplant. Before transplant, 9 of the 24 children obtained scores above the cut-off on the child and/or parent questionnaire, which had fallen to 3 after the transplant. Two of
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these 3 patients, both of whom had an original diagnosis of CM, had obtained scores above the cut-off before transplantation, but the third was a new “case.” This patient had an original diagnosis of CHD and had significant difficulties accepting the transplant and her unfulfilled expectations. Scores on both the MFQ-P and MFQ-C were above the cut-off and she ended up being referred and treated for clinical depression. This study has provided information on the occurrence of depressive symptomatology in patients before and 1 year after transplantation. Further research is needed to clarify the longer term picture for these patients, with a view to identifying those patients at risk of developing significant depression, so that psychosocial interventions to reduce morbidity can be targeted and evaluated. At the same time, it is important to acknowledge that, in some situations, the child’s or adolescent’s manifestation of depressive symptoms may be an appropriate reaction.34 The efficacy of treatment methods such as cognitive-behavior therapy for alleviating symptoms of depression, at least in the short term, has been shown with clinic populations,35 with additional beneficial effects on aspects such as self-esteem. Such treatments have not been systematically evaluated with transplant patients, but would appear to have much to offer this patient group. If children and adolescents are to maximize the opportunities, both medical and psychologic, that heart and heart–lung transplantation can offer them, then it is essential that patients who develop affective disorders are identified and appropriate interventions are planned early in the transplant process. The authors thank Professor Richard Harrington for permission to have access to unpublished data during the preparation of this manuscript. REFERENCES 1. Kent L, Vostanis P, Feehan C. Detection of major and minor depression in children and adolescents: evaluation of the Mood and Feelings Questionnaire. J Child Psychol Psychiatry 1997;38:565–73. 2. Fleming JE, Offord DR, Boyle MH. Prevalence of childhood and adolescent depression in the community: Ontario child health study. Br J Psychiatry 1989;155:647–54. 3. Bailly D, Beuscart R, Collinet C, Alexandre JY, Parquet PJ. Sex differences in the manifestations of depression in young people. A study of French high school students. Part 1: prevalence and clinical data. Eur Child Adolesc Psychiatry 1992;1:135–45. 4. Cooper PJ, Goodyer I. A community study of adolescent girls: estimates of symptoms and syndrome prevalence. Br J Psychiatry 1993;163:369 –74. 5. Angold A. Childhood and adolescent depression 1. Epidemiological and aetiological aspects. Br J Psychiatry 1988; 152:601–17. 6. Bennett DP. Depression among children with chronic
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23.
24.
25. 26.
27.
28.
29.
30.
31.
32.
33.
34.
35.
tween mothers’ and children’s reports. Arch Gen Psychiatry 1987;44:747–53. Wray J, Radley-Smith R, Yacoub M. Effect of cardiac or heart–lung transplantation on the quality of life of the paediatric patient. Qual Life Res 1992;1:41–6. Angold A, Weissman MM, John K, et al. Parent and child reports of depressive symptoms in children at low and high risk of depression. J Child Psychol Psychiatry 1987; 28:901–15. Baum M, Freier C, Freeman K, Chinnock RE. Developmental outcomes and cognitive functioning in infant and child heart transplant recipients. Progr Pediatr Cardiol 2000;11:159 –63. Johnson SB. Psychosocial factors in juvenile diabetes: a review. J Behav Med 1980;3:95–116. Noll RB, LeRoy S, Bukowski WM, Roggosch FA, Kulkarni R. Peer relationships and adjustment in children with cancer. J Pediatr Psychol 1991;16:307–26. Wray J, Franklin R, Radley-Smith R. Changes in self perception following successful heart or heart–lung transplantation. Cardiol Young 2001;11(suppl 1):22. Burke P, Meyer V, Kocoshis S, et al. Depression and anxiety in pediatric inflammatory bowel disease and cystic fibrosis. J Am Acad Child Adolesc Psychiatry 1989; 28:948 –51. Appleton PL, Ellis NC, Minchom PE, Lawson V, Boll V, Jones P. Depressive symptoms and self-concept in young people with spina bifida. J Pediatr Psychol 1997;22:707– 22. Andrews VC, Garrison CZ, Jackson KL, Addy CL, MeKeown RE. Mother–adolescent agreement on the symptoms and diagnoses of adolescent depression and conduct disorders. J Am Acad Child Adolesc Psychiatry 1993;32: 731–8. Barrett ML, Berney TP, Bhate S, et al. Diagnosing childhood depression. Who should be interviewed—parent or child. The Newcastle Child Depression Project. Br J Psychiatry 1991;159(suppl 11):22–7. Lancaster S, Prior M, Adler R. Child behaviour ratings: the influence of maternal characteristics and child temperament. J Child Psychol Psychiatry 1989;30:137–49. Renouf AG, Kovacs M. Concordance between mothers’ reports and children’s self-reports of depressive symptoms: a longitudinal study. J Am Acad Child Adolesc Psychiatry 1994;33:208 –16. Harrington R. Annotation: the natural history and treatment of child and adolescent affective disorders. J Child Psychol Psychiatry 1992;33:1287–302. Wood A, Harrington R, Moore A. Controlled trial of a brief cognitive-behavioural intervention in adolescent patients with depressive disorders. J Child Psychol Psychiatry 1996;37:737–46.
Depression in Pediatric Patients Before and 1 Year After Heart or Heart–Lung Transplantation Jo Wray, PhD and Rosemary Radley-Smith, FRCP Background: Although depression is a significant psychiatric condition of childhood and adolescence and those with a chronic medical problem are at increased risk for developing depression, the prevalence of depression in children and adolescents undergoing heart and heart–lung transplantation has not been addressed. However, the role of psychosocial factors, such as mood state, in determining outcome is being increasingly acknowledged. Methods: The Mood and Feelings Questionnaire, a rating scale of depressive symptoms, was administered to 58 children before transplantation and to 46 children after transplantation, with 24 completing both assessments. To compare children’s and parents’ ratings, both child and parent versions, with corresponding items, were utilized. Results: Pre-transplant, the mean score on the child measure was significantly higher (p ⬍ 0.001) than that on the parent measure, with 24% and 21% on the child and parent measures, respectively, obtaining scores indicative of depression. Parents of children with acquired heart disease rated their children as having significantly more depressive symptoms than parents of children with congenital heart disease or cystic fibrosis. After transplantation, there was a reduction in mean scores on both the child and parent questionnaires and the pre-transplant differences between the different diagnostic groups were no longer apparent. Over time the numbers obtaining scores indicative of depression decreased by approximately 50%. Conclusions: Transplantation is associated with a reduction in the prevalence of depressive symptomatology. The role of original diagnosis in the manifestation of depression both before and after transplantation requires further investigation. J Heart Lung Transplant 2004;23:1103-10.
Depression is now widely recognized as a significant psychiatric condition of childhood and adolescence.1 Estimates of the prevalence of major depressive disorder suggest rates of ⬍3% in school-aged children,2 rising to between 3.6% and 6% in adolescents.2– 4 However, many more children and adolescents experience depressive symptoms that do not amount to diagnostic criteria for major depressive disorder,1 and the inconsistent prevalence rates of depression reported for the general population have been attributed to variation in definitions and the measures utilized by different studies.5 Research with chronically ill children indicates that such children are at a slightly increased risk for depressive symptoms but most are not clinically depressed.6 However, among hospitalized pediatric patients, susa
From the Royal Brompton and Harefield NHS Trust, Pediatric Surgical Unit, Harefield Hospital, Harefield, Middlesex, UK. Submitted June 4, 2002; revised August 13, 2003; accepted August 13, 2003. Reprint requests: Jo Wray, PhD, Pediatric Surgical Unit, Harefield Hospital, Harefield, Middlesex UB9 6JH, UK. Telephone: 01895828761. Fax: 01895-828554. E-mail: [email protected] Copyright © 2004 by the International Society for Heart and Lung Transplantation. 1053-2498/04/$–see front matter. doi:10.1016/ j.healun.2003.08.018
pected depression or suicidal ideation constitutes the single most common reason for mental health referrals by the child’s physician.7,8 Disease severity is inconsistently related to depressive symptoms and factors such as gender, age and time since diagnosis are generally unrelated to symptoms, although there is a trend in many studies for more depressive symptoms among older children.9,10 Higher rates of depressive symptoms are associated with parent, rather than child, ratings.6 Few studies, however, utilize both child and parent ratings. Although there are few studies of depression in children with congenital heart disease (CHD), children with cyanotic disorders demonstrate more depressive symptoms than those with acyanotic disorders11 and depression scores are highest among those with the most severe disease and are positively related to the number of cardiac catheterizations, operations and clinic visits experienced by the children.12 Children with cardiomyopathy (CM) have not been systematically evaluated. Heart or heart–lung transplantation is now the treatment of choice for increasing numbers of children and adolescents with end-stage heart or lung disease. Although there is an increasing focus on the psychologic impact of transplantation the study of depression in this 1103
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Table 1. Characteristics of the Sample
Mean age (years) SD Range Number of girls Diagnosis CHD CF CM PPH Number who had heart transplants Number who had heart–lung transplants
Pre-transplant (n ⫽ 58) 12.3 2.4 8.0–16.8 26 (45)
Post-transplant (n ⫽ 46) 13.2 2.6 8.1–17.3 23 (50)
Matched Sample (n ⫽ 24) Pre-transplant 12.2 2.1 8.0–14.9
Post-transplant 13.6 2.3 9.8–16.6 9 (38)
32 (55) 12 (21) 11 (19) 3 (5) N/A
15 (33) 11 (24) 19 (41) 1 (2) 23 (50)
8 (33) 6 (25) 9 (38) 1 (4) N/A
11 (46)
N/A
23 (50)
N/A
13 (54)
Percentage values given in parentheses. CHD, congenital heart disease; CF, cystic fibrosis; CM, cardiomyopathy; PPH, primary pulmonary hypertension.
patient group has been largely neglected. To address this deficit, children and adolescents undergoing heart or heart–lung transplantation at our institution were assessed as part of a larger study evaluating the psychologic impact of transplantation on the child and family, with the following objectives: ● ● ● ●
To assess the prevalence of depression before and 12 months after transplantation. To compare children’s and parents’ ratings of depressive symptoms. To monitor change in ratings of depression over time. To examine the effects of initial diagnosis on the reporting of depression.
METHODS Patients Between October 1988 and November 1993, children and adolescents who were assessed and accepted onto the waiting list for heart or heart–lung transplantation at Harefield Hospital were approached to participate in a study looking at the psychologic impact of transplantation on children and their families. Children and families were included in the study if they were domiciled in the UK or Ireland and spoke English as their first language. This study focuses on those patients between 8 and 17 years of age. Within the study period, 65 children and adolescents who met the inclusion criteria for this part of the study were admitted to the pediatric unit at Harefield Hospital for transplant assessment, 58 of whom were recruited into the study at the time of acceptance onto the waiting list. Of the remaining patients, 6 were too ill to undergo any psychologic testing and 1 was subsequently not accepted for transplant. Forty-six patients were assessed 1 year after heart (n ⫽ 23) or heart–lung (n ⫽ 23) transplantation, with 24 children completing both the pre- and post-trans-
plant assessments. Of the 58 seen pre-transplant, 35 were transplanted within the study period, 7 of whom died within the first year after transplant and 4 were ⬍1 year post-transplant by the end of the study period and so were not followed-up. Fourteen of the children were still on the waiting list at the end of the study period and another 9 died while on the waiting list. Twentyfour of the 46 children seen 1 year after transplant were also seen pre-transplant. Of the remaining 22 not seen pre-operatively, 9 were transplanted during the 12 months before the study began, 4 were younger than 8 years old when they were put on the waiting list, 5 were accepted for transplant at another hospital and 4 were too sick to be assessed pre-transplant. At 12month follow-up, all 46 patients were clinically well and had returned to age-appropriate activities. Characteristics of the sample are summarized in Table 1. Measures The measure of depression utilized in this study was the 33-item Mood and Feelings Questionnaire (MFQ).13 This questionnaire exists in separate child (MFQ-C) and parent (MFQ-P) versions and was developed to select children and adolescents for an epidemiologic study of depression. The questionnaire, for children 8 to 18 years of age, is based on DSM-III-R14 criteria for major depressive disorder. The MFQ consists of statements with response on a 3-point scale (“true,” “sometimes true” and “not true,” which are scored 2, 1 and 0, respectively), and for this study the statements referred to a period covering the previous 2 weeks. There are no reverse-coded items. Satisfactory reliability and validity have been reported15 and the psychometric properties of the MFQ have been comprehensively tested, using methods such as received operating characteristic
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(ROC) analysis,16 which indicates that the MFQ is a valid instrument for detecting DSM-III-R depression. Cut-off scores of 27 on the MFQ-C and 21 on the MFQ-P were used to identify children likely to be depressed.16 To our knowledge, the measure chosen for this study has not been used in other studies of chronically ill children. The reasons for choosing the MFQ were: first, that much MFQ data have been collected from general population samples in the UK4,17; second, that the MFQ was specifically designed to identify DSM-III-R depression; and third, that it exists in parallel child and parent forms. The other questionnaire with the closest overlap with DSM-III-R symptomatology is the Child Depression Inventory (CDI),18 which has been used previously with chronically ill children. However, the CDI requires children to remember and compare 3 statements at a time and, for this reason, it has been suggested that the MFQ makes fewer demands than the CDI on the child.19 This was believed to be an important consideration, not only because ease of use for children and parents was likely to improve adherence, but also because our patients, particularly before transplant, were chronically ill and often less able to cope with the cognitive demands of a questionnaire such as the CDI. Children and adolescents were asked to complete the child version of the MFQ before and 1 year after transplantation as part of a comprehensive battery of tests. Parents were also asked to complete the parent version on each test occasion. Completion rates were satisfactory, with 91% of children and 93% of parents completing the measure pre-transplant and 100% of children and 83% of parents completing the task after transplant. In addition to completing the questionnaires, parents were also seen for a semi-structured interview during which information was collected on demographic, social and medical variables. The study was given institutional approval and all patients and their families gave informed consent to take part. Statistical Analysis The chi-square test was used for comparison of categoric variables and the Mann–Whitney U-test was used for comparison of continuous variables. Matched-pair data were compared with the Wilcoxon signed-rank test. All correlation data were analyzed using Spearman correlation coefficients. RESULTS Pre-Transplant Assessment Table 2 shows the mean scores and numbers obtaining scores indicative of depression on the MFQ-C and MFQ-P. Overall, 18 children (31%) had scores above the cut-off point on the parent and/or child questionnaire. Although MFQ-C scores were higher than MFQ-P scores
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for both the depressed and non-depressed samples (depressed sample [defined as children who scored above the cut-off on either the child and/or parent questionnaire]: MFQ-C, mean 30.50; MFQ-P, mean 23.88), the difference reached significance only for the non-depressed sample (MFQ-C, mean 14.26; MFQ-P, mean 10.03; Z ⫽ ⫺3.303 and p ⫽ 0.001). Effects of Age. There was no significant difference between the mean ages of the depressed sample and non-depressed sample (mean for depressed sample: 12.52 years, SD 2.56 years; mean for non-depressed sample: 12.49 years, SD 2.57 years). Division of the sample into 2 more clinically meaningful age bands of 8.0 to 12.9 years and 13.0 to 16.8 years resulted in no significant difference for depression scores between the 2 groups. Parent–Child Agreement. Overall, the correlation coefficient for parent and child total MFQ scores was 0.381 (p ⫽ 0.007), with correlations on the individual matched items significant for 16 of the 33 items. There was also significant agreement between child and parent ratings of whether or not the child was depressed (r ⫽ 0.503, p ⬍ 0.001). The parent and child total scores did not correlate significantly in any of the diagnostic groups or for boys or girls. Children Not Followed-up. There were no significant differences in MFQ-P and MFQ-C mean scores between the 34 patients who were not followed-up and the 24 who were seen after transplant or between those patients who died on the waiting list and those who survived to transplant or were still on the waiting list. Post-Transplant Assessment Results of the post-transplant assessment are given in Table 2. Overall, 6 children (13%) obtained scores above the cut-off on the parent and/or child measure. Although MFQ-C scores were higher than MFQ-P scores for both the depressed and non-depressed samples (depressed sample: MFQ-C, mean 28.33; MFQ-P, mean 26.20; non-depressed sample: MFQ-C, mean 7.96; MFQ-P, mean 6.36) these differences were not significant. Effects of Age. The mean age of the depressed children did not differ from that of the non-depressed children (mean for depressed sample: 11.98 years, SD 2.70 years; mean for non-depressed sample: 13.30 years, SD 2.57 years). Division of the sample into 2 more clinically meaningful age bands of 8.1 to 12.9 years and 13.0 to 17.3 years resulted in no significant differences in depression scores between the 2 groups. Parent– child Agreement. Overall, the correlation coefficient for parent and child total MFQ scores was 0.441 (p ⫽ 0.006), with correlations on the individual matched items significant for 6 of the 33 items. Division
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Table 2. Pre- and Post-Transplant Results: Whole Sample Pre-transplant
Whole group Mean score SD Number scoring above Boys Mean score SD Number scoring above Girls Mean score SD Number scoring above CHD Mean score SD Number scoring above CF Mean score SD Number scoring above CM Mean score SD Number scoring above PPH Mean score SD Number scoring above Heart recipients Mean score SD Number scoring above Heart–lung recipients Mean score SD Number scoring above
Post-transplant
MFQ-C
MFQ-P
MFQ-C
MFQ-P
cut-off
18.96a 10.93 13 (24)
14.11a 10.00 11 (21)
10.61 10.83 4 (9)
8.79 9.01 4 (11)
cut-off
18.41b 9.61 5 (17)
14.03b 8.53 6 (21)
8.09c 9.03 1 (4)
6.56d 8.80 2 (11)
cut-off
19.60e 12.46 8 (32)
14.21e 11.73 5 (21)
13.13c 12.05 3 (13)
10.80d 8.94 2 (10)
cut-off
18.79 10.69 6 (21)
11.70f 7.83 4 (13)
14.80 11.86 3 (20)
10.45 11.56 2 (18)
cut-off
18.67 10.61 4 (33)
12.91b 6.88 2 (18)
8.09 4.46 0 (0)
7.50 8.86 1 (10)
cut-off
20.90 14.04 3 (30)
24.60b 12.76f 5 (50)
9.26 12.14 1 (5)
8.63 7.78 1 (6)
4.50 3.54 0 (0)
1.00
6.00
cut-off
15.33 4.51 0 (0)
0 (0)
0 (0)
cut-off
— — —
— — —
11.22 12.77 2 (9)
9.63 8.67 2 (11)
cut-off
— — —
— — —
10.00 8.72 2 (9)
7.95 9.50 2 (11)
Percentage values given in parentheses. MFQ-C, Mood and Feelings Questionnaire (child version); MFQ-P, Mood and Feelings Questionnaire (parent version); CHD, congenital heart disease; CF, cystic fibrosis; CM, cardiomyopathy; PPH, primary pulmonary hypertension. a p ⬍ 0.001; bp ⬍ 0.05; cp ⫽ 0.051; dp ⫽ 0.076; ep ⬍ 0.01; fp ⬍ 0.005.
of the group according to diagnosis yielded no significant correlations between parent and child total scores for CM patients, but for the CHD and CF groups the correlations were significant (r ⫽ 0.638, p ⫽ 0.035 and r ⫽ 0.732, p ⫽ 0.016, respectively). Although correlations between MFQ-C and MFQ-P scores were not significant for heart recipients, the association was significant for heart–lung patients (r ⫽ 0.464, p ⫽ 0.046). Correlations of parent and child total scores were not significant for boys or girls. Children not seen pre-transplant. There were no significant differences in post-transplant MFQ-C and MFQ-P mean scores between the 24 patients who were
seen before transplant and the 22 not seen before transplant. Changes Over Time Twenty-four children and adolescents were assessed before and 1 year after transplant and there was a significant reduction on both the MFQ-P and MFQ-C total mean scores over time (Table 3). Although the overall numbers of children obtaining scores above the cut-off fell over time, the changes were not significant either for the whole group or for the diagnostic subgroups. There was a significant correlation between pre-transplant MFQ-C and post-transplant MFQ-C scores
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Table 3. Matched Sample: Pre- and Post-transplant Results Pre-transplant
Whole group Mean score SD Number scoring above Boys Mean score SD Number scoring above Girls Mean score SD Number scoring above CHD Mean score SD Number scoring above CF Mean score SD Number scoring above CM Mean score SD Number scoring above PPH Mean score SD Number scoring above Heart recipients Mean score SD Number scoring above Heart–lung recipients Mean score SD Number scoring above
Post-transplant
MFQ-C
MFQ-P
MFQ-C
MFQ-P
cut-off
20.33a 11.38 6 (29)
17.10b 12.34 8 (33)
10.81a 11.91 2 (8)
8.25b 9.07 2 (10)
cut-off
20.08c 9.38 3 (23)
14.83d 10.18 4 (27)
6.46c 5.85 0 (0)
5.58d 7.50 1 (8)
cut-off
20.75 14.80 3 (38)
20.50 15.13 4 (44)
17.88 15.95 2 (22)
12.25 10.21 1 (13)
cut-off
18.00 7.87 1 (17)
10.17 3.97 1 (13)
13.50 11.57 1 (13)
9.50 12.41 1 (17)
cut-off
20.17e 10.63 2 (33)
12.80 7.53 2 (33)
7.50e 2.67 0 (0)
4.00 4.42 0 (0)
cut-off
23.38f 14.75 3 (38)
26.88g 13.27 5 (56)
12.50f 16.49 1 (11)
10.25g 9.08 1 (13)
11.00
2.00
1.00
6.00
cut-off
0 (0)
0 (0)
0 (0)
0 (0)
cut-off
22.80h 14.14 4 (40)
25.44i 13.14 6 (55)
13.70h 15.08 1 (9)
10.11i 8.51 1 (11)
cut-off
18.09j 8.22 2 (18)
10.27 6.13 2 (15)
8.18j 7.95 1 (15)
6.73 9.62 1 (10)
Percentage values given in parentheses. MFQ-C, Mood and Feelings Questionnaire (child version); MFQ-P, Mood and Feelings Questionnaire (parent version); CHD, congenital heart disease; CF, cystic fibrosis; CM, cardiomyopathy; PPH, primary pulmonary hypertension. a z ⫽ ⫺3.408, p ⫽ 0.001; bz ⫽ ⫺3.030, p ⫽ 0.002; cz ⫽ ⫺3.181, p ⫽ 0.001; dZ ⫽ 2.918, p ⫽ 0.004; ez ⫽ ⫺1.992, p ⫽ 0.046; fz ⫽ ⫺2.383, p ⫽ 0.017; g z ⫽ ⫺2.524, p ⫽ 0.012; hz ⫽ ⫺2.499, p ⫽ 0.012; iz ⫽ ⫺2.668, p ⫽ 0.008; jz ⫽ ⫺2.401, p ⫽ 0.016.
(r ⫽ 0.527, p ⫽ 0.014), but not between pre- and post-transplant parent ratings. DISCUSSION We believe that this is the first reported prospective study focusing on the occurrence of depression and depressive symptomatology in children and adolescents undergoing heart or heart–lung transplantation. Furthermore, use of a questionnaire that offers parallel versions for child and parent provides ratings of depressive symptomatology from more than one source—the lack of which has been a criticism of much of the existing work on depression in chronically ill children.6
Before transplantation, the mean scores obtained on both the MFQ-C and MFQ-P did not differ significantly from normative data collected from a community sample or from the mean score of non-depressed patients in a clinic sample.1 The proportion of children obtaining scores above the cut-off was similar to the prevalence of depression reported for a group of 30 patients awaiting heart or heart–lung transplantation,20 and was within the range quoted for other groups of chronically sick children.6 However, the proportion of children obtaining scores above the cut-off was higher than found in studies of community samples. The higher mean score on the MFQ-C compared with the parent version sup-
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ports other findings for the general population that children report more depressive symptoms than their parents report them to have.21 Children with CHD awaiting heart or heart–lung transplantation have been found to have more cognitive and behavioral problems than those with CF or CM.22 However, in this study, children with CM were rated by parents as having more depressive symptomatology than children with CHD or CF—although there were no differences in the children’s own ratings between the different diagnostic groups. The more recent onset of illness in the CM group, together with parents’ own mental health, are likely explanations for this pattern of results. Overall, there was low agreement between child and parent ratings, although there was a significant correlation on the presence of depression, as determined by employing cut-off scores, which has been found previously in studies of community samples.23 The present study has limitations that must be borne in mind when interpreting the results. In particular, the same patients were not all seen on both test occasions, such that the sample group seen before and after transplant comprised only 24 patients. A number of patients who were assessed died while on the waiting list or did not receive a transplant and a small number died within 1 year of transplantation. Furthermore, a few patients were not 1-year post-transplant within the study period. Of those seen after transplantation, some had been transplanted before the study began or had been accepted for transplantation at another hospital, and so were not assessed by our team, and a small number were too ill to complete the psychologic battery of tests. To exclude all of these patients would not only have diminished the sample size but would also have left a sample unrepresentative of our transplant program’s population and would have resulted in important data being lost. Furthermore, the patients for whom data were collected both before and after transplantation did not differ significantly from the other patients seen at each test occasion. The relatively small sample sizes, particularly when considering the comparisons between the CF, CM and CHD sub-groups, means that some of the findings might be liable to Type II statistical errors. A further potential limitation is that the patients were transplanted several years ago and the data are therefore not “current.” However, we believe that these data provide important information about a topic not previously investigated and that the findings remain pertinent to the care of transplant patients in the current era. After transplantation there was a reduction in both the proportion of patients obtaining scores indicative of depression and in the mean scores on the MFQ-C and MFQ-P. The proportion of children scoring above the
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cut-off was lower than that reported recently for a group of transplant patients, 39% of whom had “some clinical level of depression.”24 In our study, 4 of the 6 patients who scored above the cut-off were subsequently referred for further psychiatric help for management of their depression. Although there were no differences between the diagnostic groups, 3 of the 6 patients had an original diagnosis of CHD, all of whom expressed some degree of disappointment with the transplant. The 2 patients with an original diagnosis of CM who obtained scores above the cut-off, although clinically well, never accepted the transplant. Both patients had problems with body image, became extremely anxious about their health, and felt socially isolated from their peer groups—findings that have also been reported in adolescents with diabetes25 and cancer.26 Although there were no differences between mean scores for boys and girls pre-transplant, girls had higher scores after transplant, with the differences approaching statistical significance. One possible contributory factor is the effects of the drugs on physical appearance—a source of distress for many patients posttransplant, but particularly for girls. We have previously found self-perception to be more negative than ideal self-perception 1 year after transplant,27 with body image and low self-esteem being 2 aspects of concern. Other studies of healthy23 and ill28,29 children have found higher rates of depressive symptomatology in girls, although the relationship between depression and gender is likely to be mediated by other variables such as age and pubertal status. The low levels of agreement between parent and child ratings of depressive symptomatology after transplant is in accordance with findings from other studies,23,30,31 with children reporting more depressive symptoms about themselves than their parents do,16,23 and the suggestion that parents may be relatively insensitive to evidence of affective disturbance in their children. Interestingly, for children with an original diagnosis of CHD and CF, but not CM, correlations between parent and child ratings were significant after transplant. A possible explanation for this discrepancy is that patients with CF or CHD had been diagnosed from infancy and parents were more aware of how their child coped with illness and treatment. For the CM patients, their experience of illness tended to be more limited and parents may have been less aware of their children’s feelings, focusing more on the visible and objective consequences of the transplant. The low levels of agreement also highlight the importance of using multiple informants. A further consideration is the mother’s own mental state and its effect on their completion of the measure. It is well documented that maternal levels of psycho-
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logic functioning influence the mother’s perceptions of her child’s behavior.32,33 A number of parents expressed difficulties coping with their child’s illness and subsequent transplant and the caretaking burdens placed on them. Although based on a small sample, the results focusing on the changes over time provide important information about the impact of transplantation on this group of patients. The significant reduction in mean scores on both the MFQ-C and MFQ-P suggest that, for the majority of patients, the improvement in their physical health results in improvements in their mental health, particularly the occurrence of depressive symptomatology. Before transplantation, patients with CM had the highest mean scores on both the MFQ-C and MFQ-P. There was a significant reduction in both of these scores over time, together with the MFQ-C mean score for the CF patients, but there were no changes in the CHD group. One explanation for these differences is that many of the patients with CM had had a recent onset of illness that proceeded fairly quickly to transplantation. Having been healthy, the sudden and dramatic deterioration in their physical health to a state where they had end-stage heart disease necessitating the life-threatening but potentially life-saving intervention of a transplant had, not surprisingly, resulted in the manifestation of depressive symptoms. One year after transplantation they had regained their physical health and resumed a normal life, albeit with some changes to their daily routine, and the occurrence of depressive symptoms had fallen accordingly. In contrast, those patients with CHD were generally less acutely ill at the time of transplant and were accustomed to living with heart disease. After transplantation, they found it more difficult to cope with “normal”— having never known it in many cases— and at the same time some patients were trying to come to terms with unfulfilled expectations. In terms of depressive symptomatology, there were few changes. Patients with CF generally understood that transplantation would not cure them of their CF, but rather would improve their respiratory symptoms. By 1 year posttransplant these patients were physically far less restricted than previously and were able to participate in age-appropriate activities, including sports. Their expectations about what transplantation would offer were more realistic than in the CHD group, and their previous experience of medical treatments resulted in better adaptation to the demands of transplantation. There was a significant correlation between pre- and post-transplant scores on the MFQ-C but no correlation between parent ratings before and after transplant. Before transplant, 9 of the 24 children obtained scores above the cut-off on the child and/or parent questionnaire, which had fallen to 3 after the transplant. Two of
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these 3 patients, both of whom had an original diagnosis of CM, had obtained scores above the cut-off before transplantation, but the third was a new “case.” This patient had an original diagnosis of CHD and had significant difficulties accepting the transplant and her unfulfilled expectations. Scores on both the MFQ-P and MFQ-C were above the cut-off and she ended up being referred and treated for clinical depression. This study has provided information on the occurrence of depressive symptomatology in patients before and 1 year after transplantation. Further research is needed to clarify the longer term picture for these patients, with a view to identifying those patients at risk of developing significant depression, so that psychosocial interventions to reduce morbidity can be targeted and evaluated. At the same time, it is important to acknowledge that, in some situations, the child’s or adolescent’s manifestation of depressive symptoms may be an appropriate reaction.34 The efficacy of treatment methods such as cognitive-behavior therapy for alleviating symptoms of depression, at least in the short term, has been shown with clinic populations,35 with additional beneficial effects on aspects such as self-esteem. Such treatments have not been systematically evaluated with transplant patients, but would appear to have much to offer this patient group. If children and adolescents are to maximize the opportunities, both medical and psychologic, that heart and heart–lung transplantation can offer them, then it is essential that patients who develop affective disorders are identified and appropriate interventions are planned early in the transplant process. The authors thank Professor Richard Harrington for permission to have access to unpublished data during the preparation of this manuscript. REFERENCES 1. Kent L, Vostanis P, Feehan C. Detection of major and minor depression in children and adolescents: evaluation of the Mood and Feelings Questionnaire. J Child Psychol Psychiatry 1997;38:565–73. 2. Fleming JE, Offord DR, Boyle MH. Prevalence of childhood and adolescent depression in the community: Ontario child health study. Br J Psychiatry 1989;155:647–54. 3. Bailly D, Beuscart R, Collinet C, Alexandre JY, Parquet PJ. Sex differences in the manifestations of depression in young people. A study of French high school students. Part 1: prevalence and clinical data. Eur Child Adolesc Psychiatry 1992;1:135–45. 4. Cooper PJ, Goodyer I. A community study of adolescent girls: estimates of symptoms and syndrome prevalence. Br J Psychiatry 1993;163:369 –74. 5. Angold A. Childhood and adolescent depression 1. Epidemiological and aetiological aspects. Br J Psychiatry 1988; 152:601–17. 6. Bennett DP. Depression among children with chronic
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