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Quality of Life in Adult Survivors of Pediatric Kidney Transplantation

Haavisto, Anu1; Jalanko, Hannu2; Sintonen, Harri3; Holmberg, Christer2; Qvist, Erik2,4

doi: 10.1097/TP.0b013e318237062b
Clinical and Translational Research
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Background. There are few studies assessing long-term adult outcome and health-related quality of life (HRQOL) in former pediatric high-risk kidney transplant (TX) recipients.

Methods. Twenty-one patients were assessed at mean age of 21.1 years. Mean age at first TX was 2.4 years. Brain arterial border zone infarcts had been documented in 54% of the children. HRQOL was assessed with the general 15-dimensional (15D) instrument generating an index on a 0 and 1 scale (1 for best). The results were compared with the corresponding childhood 17-dimensional instrument and an adult control group from the general population. Psychosocial adjustment was assessed with the ASEBA Adult Self Report (ASR) and compared with the childhood Child Behavior Checklist assessments.

Results. Half of the patients (52%) had a secondary level general or vocational education. The educational outcome was evenly distributed (compulsory vs. secondary) regardless of previous childhood brain ischemia. The ASR Total Problems score was in the normal range for all patients. Four patients had scores in the pathological range for Externalizing or Internalizing Problems. There was a correlation between the childhood Child Behavior Checklist problem scores and the adult ASR scores for Internalizing and Total Problems but not for Externalizing Problems. Their mean 15D HRQOL index was 0.94 and lower than for the control group (0.97, P=0.04). There was a strong correlation between the childhood 17-dimensional and the adult 15D HRQOL index (r=0.63, P=0.003).

Conclusion. The long-term outcome is fair in former high-risk pediatric TX patients with neurological comorbidity. Childhood psychosocial adjustment and HRQOL may predict the outcome in adults.

1 Institute of Behavioural Sciences, University of Helsinki, Helsinki, Finland.

2 Pediatric Nephrology and Transplantation, Children's Hospital, University of Helsinki, Helsinki, Finland.

3 Hjelt Institute, University of Helsinki, Helsinki, Finland.

This work was supported by grants from the Foundation for Pediatric Research, the Arvo and Lea Ylppö Foundation, the Signe and Ane Gyllenberg Foundation, the Perklén Foundation, and the Liv och hälsa foundation (A.H.).

The authors declare no conflicts of interest.

4 Address correspondence to: Erik Qvist, M.D., Pediatric Nephrology and Transplantation, Children's Hospital, University of Helsinki and Helsinki University, Central Hospital, Stenbäckinkatu 11, FIN-00290, Finland.

Email: erik.qvist@kolumbus.fi

A.H. and E.Q. participated in performance of the research; A.H., H.S., and E.Q. participated in data analysis; and A.H., H.J., H.S., C.H., and E.Q. participated in writing of the the manuscript.

Received 20 June 2011. Revision requested 6 August 2011.

Accepted 8 September 2011.

Many adult studies on quality of life (QOL) and adjustment in former pediatric kidney transplant (TX) patients are based on nonstandardized questionnaires or somatic data (e.g., growth) (1, 2). Some studies have focused on educational or employment information or on social life (e.g., housing or marital status) (3).

Only a few have used standardized measures for assessment of QOL and have generally included children transplanted within a wide age range (4). There are few studies where standardized methods have been used to examine the long-term social adjustment and QOL in adults who have received their TX as infants or very young.

The outcome of children transplanted early in life (younger than 5 years of age) has improved (5). However, improved survival rates do not necessarily mean improved neurodevelopmental outcome and rehabilitation (6). The aim of this study was to assess the outcome of former pediatric high-risk patients with neurological complications and comorbidity. Adulthood academic and vocational outcomes were of particular interest for those children who had had ischemic findings on their brain magnetic resonance images (MRIs) in childhood. Arterial border zone infarcts were documented in 54% of the children now assessed for this follow-up study (7).

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RESULTS

The group that did not participate in the study did not differ from the study group in any major clinical aspect (Table 1). Of those participating in the study, one was back on dialysis, one had had three TXs and six two TXs, and the rest were on their first graft.

TABLE 1

TABLE 1

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Quality of Life

The QOL profiles of the TX and control group differed in the majority of the dimensions tested, part of them significantly so (Fig. 1). The mean total 15-dimensional (15D) index was 0.94±0.04 for the TX patients and 0.97±0.07 for the control group (P=0.04). There was a strong correlation between the adult 15D scores and pediatric 17-dimensional (17D) scores (r=0.63, P=0.003; Fig. 2).

FIGURE 1.

FIGURE 1.

FIGURE 2.

FIGURE 2.

Those who were on their first TX had similar QOL scores compared with the rest (dialysis or re-TX), 0.95±0.07 vs. 0.93±0.08 (P=0.55). Those with impaired graft function (n=7; S-Creatinine>200 μmol/L or on dialysis) had similar QOL scores than the rest (0.94±0.08 vs. 0.94±0.07, P=0.12).

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Psychosocial Adjustment

There was a correlation between the adult/Adult Self Report (ASR) and pediatric/Child Behavior Checklist (CBCL) Internalizing scores (Fig. 3) and Total Problems scores (rho=0.51, P=0.03), but not for the Externalizing scores. Four patients (19.0%) in the adult population scored above the limit for clinical problems (T-score >63) in Internalizing and Externalizing Problems (two patients each), but none had pathological Total Problems scores. Four children (12.5%) had previously scored above the limit for Internalizing and Total Problems scores and five (15.6%) for Externalizing scores. Three of the children with pathological Internalizing scores and one pathological Externalizing and Total Problems score were not assessed as adults.

FIGURE 3.

FIGURE 3.

Half of the adults had an upper secondary or vocational education or an university education (n=11; Fig. 4). Their health-related quality of life (HRQOL) index was significantly better than the group with only comprehensive education (n=10; 0.98±0.03 vs. 0.90±0.09; P=0.01).

FIGURE 4.

FIGURE 4.

Half of the adult patients had been diagnosed with brain arterial border zone ischemic infarcts as children. The educational outcome was evenly distributed regardless of previous childhood brain ischemia (5/11 with childhood ischemia had higher than comprehensive education compared with 6/10 of those without childhood ischemia, P=0.67). The adult 15D HRQOL index was 0.93±0.07 for those who had had childhood brain ischemic findings compared with 0.95±0.08 for those without (P=0.63). In addition, there was no difference in the ASR scores between the groups. The Total, External, and Internal ASR scores were 50.7±9.5, 53.1±8.4, and 48.9±11.9, respectively, for those with previous childhood ischemia compared with 48.8±6.6, 47.9±8.0, and 51.4±11.3, respectively, for those without (P=0.61, 0.17, and 0.63).

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DISCUSSION

In this study, we investigated adulthood QOL and psychosocial adjustment in former pediatric kidney recipients transplanted under the age of 5 years. Although survival in the youngest TX recipients has improved during the last decade, our patient cohort, transplanted between 1987 and 1995, still in many aspects has to be regarded as a risk group (5, 6). The high incidence of neurological sequelae in this patient cohort was particularly worrisome (6).

Adulthood QOL was inferior compared with the age-standardized general population. Similarly, the assessments made 10 years earlier showed poorer QOL compared with the control group of same-aged school children. In children, and in adults, with a chronic disease, QOL is usually inferior compared with general population (8, 9). This has, in general, been observed in other studies reassessing former pediatric patients in adulthood using standardized methods for evaluation (10, 11). In contrast, Bartosh et al. (1) reported fair or good QOL in 95% of former pediatric patients. QOL is generally evaluated as good in studies using nonstandardized questionnaires using Likert scales (2, 12). QOL is always open to interpretations and arbitrarily dependent on judgment. However, standardized assessments will most likely produce more robust data for comparison and evaluation.

Very few studies have used standardized methods to evaluate psychosocial adjustment. The assessment of adjustment is usually restricted to vocational, educational, and marital status and outcomes. We used the standardized ASEBA forms, which are the most widely used assessment tools for psychosocial adjustment. The incidence of impaired psychosocial adjustment had not increased in our study population between the childhood and adulthood assessments.

There was a correlation between the childhood and adulthood assessments for both QOL and psychosocial adjustment. This can be interpreted in several ways. First, using standardized methods for evaluation give us a possibility to make proper follow-up studies regardless of age groups (i.e., measuring the same kind of aspects or dimensions). Second, it may reveal that the level of QOL and psychosocial adjustment is predictable. Inferior psychosocial adjustment will affect adjustment and QOL in adulthood (4). Thus, there is a chance to improve the long-term outcome after pediatric TX by facilitating psychosocial adjustment and enhancing QOL in childhood.

There are several measures that can be undertaken to achieve this. First, the children have to be assessed regularly for QOL and psychosocial adjustment, and these assessments serve as a tool to introduce possible interventions. Both the 15D and 17D HRQOL and ASEBA assessments are easy to use in the clinical setting (13–15). Second, the children benefit from being properly assessed with neuropsychological testing as to find possible needs for rehabilitation (16). Finally, there has been major focus on the transition process when the adolescents leave the pediatric setting heading for the adult clinics (17).

In a large Dutch study of former pediatric TX recipients, the educational attainment was lower than in the general population. Of the patients, 57% had low vocational training compared with 27% of the general population. The figures for high vocational training were vice versa, 12% against 26%. Figures from different societies are somewhat difficult to compare, because of different educational systems. Likewise, employment figures differ because of large differences in social security systems between countries (18). The figures for adults with childhood end-stage renal disease are usually better than for those with adult onset of disease (3). In this study, 52% of the adults had a postcomprehensive level of education compared with 66% of the general population in Finland in 2010. However, this figure varies regionally within the country (47%–79%) (19). In a report from a Chinese center, 44% had education above junior high school compared with the national average of 63% (20). These figures are somewhat better than in a French study where 30% had a higher educational level than 9 years of education compared with 52% in our study (21). Again, the data may be difficult to compare because of varying schooling systems.

The important finding in this study is that ischemic findings on the childhood brain MRI scans did not have the deleterious long-term effects on the children's development that was anticipated. This was particularly obvious for one patient attending university despite previous ischemia. Arterial border zones are several anatomical regions of the brain that have a reduced number of collaterals and therefore vulnerable to ischemia caused by hemodynamic changes (e.g., hypotension and hemodynamic crises). Hemodynamic crises were documented in the majority of the children and occurred mainly before TX during dialysis. Patients with border zone lesions also had longer dialysis treatment (7). Dialysis treatment has improved, and the children are today hemodynamically more stable, but dialysis treatment in infants is still demanding. Detection of subtle neurocognitive impairment was not the scope of this study and cannot be excluded, but the overall outcome of these patients was reassuring.

This study has some limitations. A substantial number of patients (30% of the original cohort) did not participate in the follow-up study. However, this is in line with figures from other studies (4), and the dropout rate has been substantially higher in many studies (1, 12). The group not participating in this study did not, however, differ from the study group in any of the major aspects of school attendance, general cognitive level, or neuroimaging findings or kidney function (Table 1).

The small number of patients from a single center limits the generalization of the conclusions made in this study. The effect of impaired long-term kidney function, returning to dialysis, and so forth on QOL and psychosocial adjustment could not be demonstrated. However, the information provided is important as it gives a reassurance that the results from high-risk TX are fair. Although overall results after pediatric TX have improved, extended inclusion criteria may add more challenges with more children having neurological comorbidity. This study may add some information to the ethical issues regarding extended inclusion criteria.

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MATERIALS AND METHODS

Patients

Thirty-two children, transplanted between 1987 and 1995, were previously assessed for neurodevelopmental outcome, psychosocial adjustment, and HRQOL at school age (6, 22). The mean age at the initial assessment was 9.6±1.6 years. Mean age at first TX was 2.4±1.1 years. Fifty percent had received a primary living-related donor kidney. The most common disease (87%) was the Finnish type of congenital nephrotic syndrome with mutations in the nephrin gene (NPSH1) (23). Other pre-TX treatment regimens of our patients and their management after TX have been reported previously (24).

All children from the original cohort were asked to take part in a follow-up study as adults. Two of the patients in the original cohort are deceased. Of those eligible from the original cohort, 21 (70%) participated (eight female). Nine patients either refused or were not reached. This group was compared with the study group to assess any bias in favor of the study group (Table 1). The patients were studied at a mean age of 21.1 years (17.8–24.3 years), that is, on average 18.7 years after TX and 10.3 years after the first assessment.

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Methods

Adulthood QOL was assessed with a generic 15D instrument (14). The results were compared with an age-standardized representative sample of general population (control group, n=427) (25).

The results were also compared with the previous assessment with the corresponding generic standardized 17D measure for preadolescents (13). The children had previously completed the questionnaire themselves during a structured interview. The 17D profiles of the children had been compared with that of 244 normal school children. The 15D and the 17D produce both a multidimensional profile and a single utility index score, ranging from 0 to 1 (best possible).

Psychosocial adjustment was assessed with the ASEBA ASR for the adult cohort and compared with the previous results collected with the ASEBA CBCL (15, 26). The CBCL and ASR are widely used standardized questionnaire designed to obtain a systematic report on behavioral and social problems in children and adults. The questionnaires generate three summary scores: an Internalizing Problems score (withdrawn, somatic complaints, and anxious/depressed scales), Externalizing Problems score (delinquent and aggressive behavior scales), and the compiled Total Problems score. A T-score of 50 approximates the 50th percentile and a score of 70 approximates 97.7th percentile. For statistical/clinical purposes, the authors recommend to use a cut-off point of 63 to discriminate between healthy and pathological scores (15).

Detailed cognitive and neurodevelopmental data on the children were available including cognitive performance (Wechsler Intelligence Scale for Children, Revised) and MRI of the brain (6, 7). Kidney function was assessed with S-Creatinine.

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Statistical Analyses

The independent samples t test and Mann-Whitney U test were used for comparison of continuous data between groups. Pearson or (nonparametric) Spearman's rho were used for correlation analyses between outcome and background characteristics. Fisher's exact test was used when comparing categorical data. A P value of less than 0.05 was considered significant.

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Ethics

The Ethical Committee of the Hospital approved the study design. Informed consent was obtained from each child's caregiver in the original cohort and from the patients themselves in this follow-up study.

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Keywords:

Kidney transplantation; Child; Outcome; Psychosocial adjustment; Quality of life

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