Understanding the pathway between the transplant experience and health-related quality of life outcomes in adolescents

Abstract:  Developments in solid organ transplantation have resulted in improved survival for children with advanced kidney, liver, and heart disease; however, concerns have been raised regarding the quality of life of survivors. This study examined HRQOL in adolescent transplant recipients. We examined the influence of demographic, treatment regimen, and family factors on physical and mental health domains of HRQOL. The current single-center investigation involved 68 solid organ transplant recipients and their parents. All families participated in a structured interview to collect information on demographics, characteristics of the adolescents' disease and treatment regimen, family functioning, and HRQOL for parents and adolescents. Using hierarchical regression analyses, predictive models of physical functioning and mental health outcomes for adolescent transplant recipients were developed for parent-proxy and adolescent self-report. Perceived frequency of medication side-effects and family conflict significantly contributed to adolescent physical functioning and mental health outcomes. Taken together, transplant consequences and family environment significantly impact physical and mental health outcomes in adolescent transplant recipients. Our findings demonstrate the need for pharmacological considerations and psychological interventions to address these areas.     

Health‐related quality of life among siblings of kidney transplant recipients

Studies are increasingly recognizing health‐related quality of life (HRQOL) as a key pediatric outcome in both clinical and research settings and an essential health outcome measure to assess the effectiveness of medical treatment. However, it has not yet been studied among the healthy siblings of kidney transplant recipients. The aim of this study, therefore, is to examine HRQOL among this population. We asked the following three groups to complete a validated measure of HRQOL among children (KIDSCREEN‐52 ) : siblings of children who had received kidney transplants (n = 50), kidney transplant recipients (n = 43), and a healthy control group (n = 84). We found that siblings of kidney transplant patients exhibited lower scores for financial resources and autonomy than kidney transplant recipients. They also served lower on physical well‐being, financial resources, autonomy, and parent relations/home life than the control group. However, they scored higher on social acceptance than kidney transplant recipients. Our study underscores the importance of assessing HRQOL in families including a child diagnosed with a chronic illness. Siblings require social and psychological support to promote coping and adaptation.     

Risk factors for impaired quality of life and psychosocial adjustment after pediatric heart,kidney, and liver transplantation

Few studies compare HRQOL and PSA in children who have undergone different types of solid organ Tx. In this cross‐sectional study, HRQOL and PSA were assessed in 74 Tx patients (16 heart, 44 kidney, 14 liver) at a mean age of 11.5 (range 6.3–16.7), 7.2 yr post‐Tx (range 1.0–15.0). HRQOL was self‐assessed using standardized health utility questionnaires (15D–17D). The patients' PSA was evaluated using the Child Behavior Checklist for parents, Youth Self‐Report for patients aged 11–16 yr, and Teacher Report Form. Outcomes did not differ significantly between Tx groups. Preadolescents (8–11 yr) reported poorer HRQOL compared with same‐age peers (p = 0.020). In contrast, adolescents reported similar HRQOL and PSA compared to the general population. Proxy‐reports revealed more PSA problems compared with age expectations (p < 0.01), mainly in internalizing behavior (p < 0.01). Lower HRQOL was associated with shorter follow‐up time since Tx, congenital disease, and a psychiatric or neurological diagnosis. PSA problems were associated with family‐related variables, neurological diagnosis, shorter follow‐up time, and in teacher‐reports longer disease duration before Tx. Different pediatric Tx groups have similar outcome. Neurological comorbidity and shorter follow‐up time are important risk factors, but the impact of family‐related variables on PSA indicate the need of family interventions.     

Intellectual and academic performance in children undergoing solid organ pretransplant evaluation

Although prior research has shown lower intellectual functioning across pediatric solid organ transplant recipients relative to matched siblings or norm comparisons, few studies have assessed intellectual and academic performance prior to transplant across organ groups. The current data examine intellectual and academic functioning in children being evaluated for kidney, liver, or heart transplant. This investigation included intellectual and academic testing data from 195 children and adolescents between the ages of six and 19 yr evaluated for solid organ transplantation. Across organ groups, patients' intellectual functioning as estimated by the WASI/WASI‐II at the time of pretransplant evaluation was within the average range, but lower compared to test norms. Patients demonstrated lower estimates of word reading, math computation, and spelling skills compared to the normal population, with the exception of heart patients' word reading and spelling skills and liver patients' spelling scores. Cognitive and academic impairments exist in children prior to transplantation. Findings emphasize the support that patients may require to manage the complicated medical regimen and succeed academically. Routine cognitive and academic assessment can inform healthcare providers regarding transplant patients' capacity to take on increasing medical responsibility and successfully reintegrate into the school environment.     

Sleep quality is associated with psychosocial functioning and health‐related quality of life in pediatric transplant recipients

This study examined patient‐reported sleep quality in a single‐center cross‐sectional sample of adolescents with solid organ transplants and evaluated associations between sleep quality, psychosocial functioning (ie, depression/anxiety symptoms), and HRQOL. Health disparities associated with minority race/ethnicity and socioeconomic variables were also examined. Sixty‐nine adolescents (M = 16.51 years; SD = 1.63) who received a solid organ transplant (kidney: n = 25; liver: n = 24; heart: n = 20) completed self‐report measures of sleep quality, psychosocial functioning, and HRQOL. Adolescent transplant recipients endorsed significantly lower levels of sleep quality (ie, falling asleep) compared with previously published norms of healthy peers (t = ?3.60; P ≤ .001). Higher sleep quality was significantly associated with fewer anxiety and depressive symptoms (r = ?.31 to ?.40), and higher physical and psychosocial HRQOL (r = .33‐.43). Adolescents from minority backgrounds had significantly worse sleep quality compared with non‐Hispanic Whites. Adolescent transplant recipients, particularly those from minority backgrounds, may be at increased risk for experiencing poor sleep quality. Suboptimal sleep is a risk factor for higher levels of anxiety and depressive symptoms, as well as lower levels of physical and psychosocial HRQOL. Sleep is an important modifiable factor that, if improved, may contribute to lower anxiety/depressive symptoms and better HRQOL in adolescent transplant recipients.     

Social support, coping, and psychological distress in mothers and fathers of pediatric transplant candidates: a pilot study

Both parents and children report significant psychological difficulties and family disruption prior to transplantation; however, there have been fewer studies examining predictors of distress in both mothers and fathers and across multiple transplant groups. Thirty-four mothers and 22 fathers participated in this pilot study. Parents completed measures during a routine tertiary pretransplant psychological evaluation. Paired sample t-test results indicated that mothers and fathers differed significantly on specific coping strategies employed, with fathers less likely to use engagement strategies than mothers. Correlation analyses demonstrated strong associations between engagement coping strategies and less psychological distress and the reverse with disengagement coping strategies for both mothers and fathers. Social support was associated with less psychological distress for mothers, but was unrelated to distress for fathers. Using regression analyses, for mothers, lack of social support, and disengagement coping predicted poor psychological outcomes. Taken together, these results suggest that assessing specific coping strategies employed by both mothers and fathers is an essential component of the pretransplant evaluation process. This study delineates areas for intervention that impact adjustment in parents of pediatric transplant candidates.     

Transition from hospital to home following pediatric solid organ transplant: Qualitative findings of parent experience

Transplant providers are challenged to determine appropriate interventions for patients and families due to limited published research regarding the context of the post‐discharge experience from the perspective of parents of transplanted children. The purpose of this study is to describe the parent perspective of the transition from hospital to home following their child's solid organ transplant. Within a mixed‐methods design, 37 parents of pediatric heart, kidney, and liver transplant recipients from three pediatric hospitals responded to qualitative interview questions on the day of hospital discharge and three wk following hospital discharge. Insight to the discharge preparation process revealed necessary education components. Post‐discharge themes were identified for coping, knowledge, and adherence. The parents' responses provide awareness as to specific stressors and concerns parents are faced with when their child is discharged from the hospital after solid organ transplant and opportunities for ways the transplant team can provide support.     

The effects of gender on health‐related quality of life in pediatric live‐donor kidney transplantation: A single‐center experience in a developing country

El‐Husseini A, Hassan R, Sobh M, Ghoneim M. The effects of gender on health‐related quality of life in pediatric live‐donor kidney transplantation: A single‐center experience in a developing country.
Pediatr Transplantation 2010:14:188–195. © 2009 John Wiley & Sons A/S. Abstract: To evaluate the effects of gender on HRQOL and overall health status in our pediatric kidney transplants. We performed a cross‐sectional study in 77 children who received living renal allo‐transplants in our center between 1981 and 2003. The patients were given a questionnaire at a post‐transplant visit. After completing, the patients returned it in a closed envelope. The questionnaire included demographic questions plus 57 multiple‐choice questions designed to analyze various aspects of post‐transplant life. Overall, the patients show satisfactory HRQOL. Most of the patients lived with their parents (79.2%). The current health status did not cause difficulties at work in 70.1% and did not interfere with the social life in 62.3% of patients. Physical and sexual growth was delayed in 48% and 85.7% of patients, respectively. A total of 67.5% of patients had normal health life or minor symptoms with normal activity. There was no significant effect of gender on HRQOL except for onset of puberty, sexual function, practicing sports, and obesity. Overall, the patients show satisfactory HRQOL. There was mild significant effect of gender on HRQOL. These findings may help health care professionals to develop gender‐specific interventions to optimize HRQOL of kidney transplants.     

Kidney and liver transplantation in children with fibrocystic liver–kidney disease: Data from the US Scientific Registry of Transplant Recipients: 1990–2010

The natural history and survival of children with fibrocystic liver–kidney disease undergoing solid organ transplantation have infrequently been described. We report outcomes in a cohort of US children with fibrocystic liver–kidney disease receiving solid organ transplants over 20 yr. Retrospective cohort study of pediatric transplant recipients with diagnoses of fibrocystic liver–kidney disease from 1/1990 to 3/2010, using data from the SRTR. Subjects were categorized by the first transplanted organ: LT, KT, or SLK. Primary outcomes were death, re‐transplant, transplant of the alternate organ, or initiation of dialysis. Seven hundred and sixteen subjects were transplanted in this period. Median age at first transplant was 9.7 yr. Of the LT, 14 (19%) required a second liver transplant at median of 0.2 yr, and five (7%) required kidney transplant or dialysis at a median of 9.0 yr. Of the KT, 188 (31%) required a second kidney transplant or dialysis at a median of 5.9 yr. Twenty‐nine (5%) subsequently received liver transplant at a median of 6.0 yr. Among patients in this registry, far more children underwent kidney than liver transplants. The risk of subsequently needing transplantation of an alternate organ was low.     

Health-related Quality of Life in Children and Adolescents With Sickle Cell Disease

Objective

To assess health-related quality of life (HRQOL) in children and adolescents with sickle cell disease (SCD).

Design, Setting, and Participants

The PedsQL 4.0 Generic Scales, a multidimensional self-report instrument that has been shown to be valid and reliable for use in children and adolescents with chronic illness, consists of 23 items that assess physical, emotional, social, and school functioning. Questionnaires were administered to 124 children and adolescents (ages 8 to 18 years, child self-report) with SCD (100 sickle cell anemia, 24 sickle β zero thalassemia) and their parents (parent-proxy report). Summary scores for children's and parents' ratings of overall HRQOL and psychosocial health and subscale scores for physical, emotional, social, and school functioning were compared with published data for healthy children. Both summary and subscale scores for children with SCD also were compared with those of their parents.

Results

Children with SCD and their parents rated overall HRQOL and all subdomains of HRQOL lower than did healthy children and their parents (P < .001). Children with SCD rated their own HRQOL significantly better than their parents did for overall HRQOL and all subdomains (P < .001) except emotional functioning (P = .06).

Conclusions

Children with SCD and their parents perceived overall HRQOL and all HRQOL subdomains to be lower than scores reported in healthy children. Therefore, successful therapeutic efforts to improve HRQOL could represent important advances in the health of children with SCD.     

Parent illness appraisals,parent adjustment,and parent-reported child quality of life in pediatric cancer

Psychosocial distress is a salient construct experienced by families of children with newly diagnosed cancer, but little is known about parental appraisal of the child's illness and the subsequent impact this may have on child and parent functioning. The goal of the present study was to examine the interrelationships among multiple parent illness appraisals, parent adjustment outcomes, and parent-reported child quality of life in parents of children diagnosed with cancer. Parents completed measures of illness appraisal (illness uncertainty and attitude toward illness), parent adjustment (general distress, posttraumatic stress, parenting stress), and child quality of life (general and cancer-related). Path analysis revealed direct effects for parent illness uncertainty and illness attitudes on all 3 measures of parent adjustment. Illness uncertainty, but not illness attitudes, demonstrated a direct effect on parent-reported child general quality of life; parenting stress had direct effects on general and cancer-related quality of life. Exploratory analyses indicated that parent illness uncertainty and illness attitudes conferred indirect effects on parent-reported general and cancer-related quality of life through parenting stress. Negative parent illness appraisals appear to have adverse impacts on parents' psychosocial functioning and have implications for the well-being of their child with cancer.     

The impact of recipient BKV shedding before transplant on BKV viruria,DNAemia, and nephropathy post‐transplant: A prospective study

We previously demonstrated that detectable BKV replication in donor urine pretransplant was significantly associated with post‐transplant recipient BKV viremia. In this 4‐year prospective study, we assessed whether recipient BKV replication pretransplant was associated with post‐transplant viremia/BKV nephropathy. We studied 220 primary adult and pediatric organ transplant recipients for 490 person‐years and 2100 clinical visits. BKV viruria was detectable in 28 (16%), 26 adults and two children; and viremia in none pretransplant. Post‐transplant viruria occurred in all recipients with pretransplant BKV viruria, significantly more than in recipients without pretransplant viruria on univariate (P<.005) and multivariate analysis including type of organ transplanted and immunosuppression type (P .008). Time to post‐transplant viruria was significantly shorter in recipients with pretransplant viruria (P .01). By univariate and multivariate analysis, BKV viruria in recipients pretransplant did not impact post‐transplant BKV viremia (P=.97 and .97, respectively) even when stratified by type of organ transplant (kidney P=.6; liver P=.5). The peak serum and urine BKV PCR post‐transplant were not significantly different in patients with pretransplant BKV viruria and no one developed BK nephropathy. In conclusion, recipient BKV viruria prior to transplant predicts post‐transplant viruria but not viremia or BKV nephropathy.     

Does the severity of congenital heart defects affect disease-specific health-related quality of life in children in Bosnia and Herzegovina?

The aim of this study was to assess whether the severity of congenital heart defects (CHD) affects disease-specific health-related quality of life (HRQOL) in children after open heart surgery. One hundred and fourteen children with CHD and one of their parents participated in the study. HRQOL was evaluated by the PedsQL™ 3.0 Cardiac Module. The children were assigned to one of three groups according to severity of CHD. Children with cyanotic CHD (Group 3) reported that their HRQOL on several domains was lower than that of children with anomalies with the left–right shunt and children with obstructive anomalies. Also, by parent proxy-report, patients with anomalies with the left–right shunt had statistically significant, better HRQOL scores for the heart problems and treatment scales, perceived physical appearance, treatment anxiety, cognitive problems, and communication scales in comparison to the children with cyanotic CHD. By self-report, children of Group 1 reported that they had statistically significant, better HRQOL in the heart problems and treatment scales compared with Group 2. Conclusions: The results of the assessment by the PedsQL™ 3.0 Cardiac Module, a cardiac disease-specific instrument for children with CHD, indicate that HRQOL is poorest in children with complex CHD. Therefore, it is necessary to take the appropriate preventive measures for these patients, which include early (timely) cardiosurgical intervention and active psychological support to limit the negative impact of serious forms of CHD on the quality of life of these children.     

Barriers to live donor kidney transplants in the pediatric population: A single‐center experience

A decrease in live donor pediatric kidney transplants has occurred in the United States. This study investigates barriers that may influence access to live donor kidney transplants in children. Retrospective chart review was conducted for 91 children (69% male, mean age 11.9 years) who underwent pretransplant workup from 2005 to 2015 at an urban pediatric hospital. Fifty‐four percent were African American, 32% Caucasian, 8% Arabic, 3% Hispanic, and 3% Others. Government‐sponsored insurance (Medicaid/Medicare) was utilized by 73%, and 54% had dual caregivers. Only nine of 68 kidney transplants were live donor transplants. Live donor transplants (11%) were significantly (P=.008) lower than deceased donor transplants (59%) in African Americans. Private insurance was reported by 56% of live donor recipients and 25% of deceased donor recipients. Among live donor recipients, 78% were from dual caregiver families. Caregiver, health‐related, financial, and religious/cultural barriers to live donor transplants were reported, several of which may be amenable to positive intervention.     

Health‐related quality of life after combined liver and kidney transplantation in children

While reduced HRQOL following isolated organ transplantation has been previously reported, there are no data in the context of children following CLKT. Twenty‐three children who underwent CLKT at our institution were included in the study. The indication for CLKT was PH1 in 13 patients and ARPKD in 10 patients. Quantification of HRQOL was facilitated through the use of the PedsQL 4.0 Generic Core Scale. The results of the study were compared to healthy children and published data of children who had undergone LTx or KTx. The CLKT samples' child self‐report showed good HRQOL. No statistically significant difference was found between the patients with PH1 and patients with ARPKD (P=.4). Compared to healthy children, a significant difference in the total scale score, the physical health score, and the school functioning was reported. HRQOL did not differ significantly when compared to patients following isolated LTx or KTx. To improve HRQOL after CLKT, a focus on patients' physical health, educational performances, and overall quality of life is crucial. Thus, coordinated medical care across disciplines and psychological and social support is essential to achieve this goal.     

Psychological well-being in adults transplanted in childhood

Few studies have explored the long-term psychological effects on young adults of childhood transplants. The aim of the present work was to examine psychological adaptation related to self-concept, self-esteem and subjective well-being in young adults who had undergone solid organ transplantation in childhood. Twenty-four adults transplanted in childhood participated in the study (13 of them received kidney transplants, five heart transplants and six liver transplants). Participants were of both sexes, aged 18-22, and were selected from three public hospitals in Madrid. The results reveal no differences in psychological adaptation according to the transplant type (kidney, heart, or liver), and a significant difference in negative affect between women and men (women present more negative affect than men). Hierarchical regression analysis, after controlling for possible confounding effects of demographic and clinical variables, showed the predictive power of self-esteem to explain positive affect (60% of the total variance). Furthermore, physical self-concept, health status and time on waiting list explain 71% of the negative affect variance. Our data suggest the importance of self-esteem for the positive affect, and the power of clinical variables for the negative affect in young adults transplanted in childhood.     

New‐onset post‐transplantation food allergy in children – Is it attributable only to the immunosuppressive protocol?

Abstract:  New-onset post-transplantation food allergy has been described mainly after liver transplantation, and its pathogenesis was attributed to the immunomodulatory effects of tacrolimus therapy. The aim of the present study was to evaluate the association of food allergy with solid organ transplantation in our center. The medical records of children who underwent kidney transplantation and children who underwent liver or liver and kidney transplantation from 1986 to 2005 were reviewed. A total of 189 children (124 after kidney transplantation, 65 after liver or liver and kidney transplantation) received tacrolimus as part of the immunosuppressive regimen. New-onset post-transplantation food allergy was documented in four of them: two with liver transplants and two with combined kidney and liver transplants. The absence of new-onset food allergy in the children with isolated kidney transplants is compatible with other reports in the literature. This study supports the concept that the functioning liver itself, and not only tacrolimus immunosuppression, is a main contributor to food allergy in this patient population.     

Changes in psychosocial adjustment after renal transplantation.

The psychological aspects of transplantation were studied in 29 children and adolescents with functioning renal transplants. Most parents rated their child''s physical health as considerably improved after transplantation. They also noted improvements in the child''s behaviour and in the quality of family life. When compared with a sample of children being treated by hospital haemodialysis, children who had received transplants had more favourable parental views of behavioural and emotional adjustment, better parental psychiatric adjustment, and indications of superior child rated mood, self concept, and social functioning. Children who had received transplants did, however, show an increase in minor behavioural symptoms compared with healthy controls, and most parents required continuing psychological and social support as well as attention to physical aspects of the child''s condition. Kidney transplantation is associated with improved psychosocial behaviour in children, but there is a continuing need for support for parents in dealing with minor psychological problems after the transplant.     

Short stature and chronic renal failure: what concerns children and parents?

Multicentre trials are evaluating growth hormone treatment in short children (height > 2 SDs below mean) with chronic renal failure (CRF), on dialysis, or with a transplant. Thirty children and parents from four centres were interviewed to assess psychological functioning and evaluate their concerns about growth in the context of CRF. There were 24 males and six females, age range 2-18 years. Fifty per cent of patients had additional non-renal complications and 30% had learning difficulties. Differences between the respective concerns of parents and children were striking. Parents'' predominant concern was their child''s future health (50%) and prospects (37%) while children''s main concern was the impact of illness on their family (50%). Growth was a major concern for 30% of parents and 28% of children. Growth problems are important and should be considered within the context of other illness issues. Improved understanding of parental and child concerns may help maximise the benefits of growth hormone and assist in the management of children with CRF.