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.     

Health‐related quality of life in pediatric intestinal transplantation

To determine HRQOL after pediatric intestinal transplantation. Thirty‐four IT survivors from 1999 to 2012 were asked to complete age‐specific HRQOL non‐disease‐specific questionnaires: TAPQOL (0–4 yr), KINDL‐R (5–7 yr; 8–12 yr; 13–17 yr), and SF‐36v2 (>18 yr), all validated with Spanish population. Primary caregiver completed a SF‐36 questionnaire and CBI. Thirty‐one participants were included. Median age was 10.2 yr (1–29) and time after transplant 4.4 yr (0–13). Overall patient scores were 78.2 ± 10.6 (n = 8), 83.3 ± 9.7 (n = 6), 72.2 ± 9.21 (n = 6), 80.5 ± 12.4 (n = 7), and 82.2 ± 12.4 (n = 4) for each age group. Highest scores were obtained for vitality (group I), self‐esteem (group IV), and physical and social functioning and emotions (group V). Lowest scores were obtained in appetite and behavior (I), family and school (III), and chronic disease perception (III, IV). No significant differences were found between caregivers and their children. CBI showed stress in 52%. SF‐36 for caregivers was lower than general population. No significant differences were found depending on relevant clinical and sociodemographic data. HRQOL was acceptable and improved with age and time since transplantation. Parents had a slighter own QOL and worse perception of health than their children. When successful, intestinal transplantation allows a normal life in most patients and can be offered as an attractive option.     

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.     

Prospective comparison of parent and adolescent report of health‐related quality of life in adolescent solid organ transplant recipients

Devine KA, Reed‐Knight B, Simons LE, Mee LL, Blount RL. Prospective comparison of parent and adolescent report of health‐related quality of life in adolescent solid organ transplant recipients.
Pediatr Transplantation 2010: 14:1000–1006. © 2010 John Wiley & Sons A/S. Abstract: This 18‐month prospective investigation sought to examine changes in HRQOL over time for adolescent solid organ transplant recipients. Additionally, this study examined the relationship between adolescent and parent report of HRQOL and compared parent report of HRQOL to published normative data. Forty‐eight adolescent–parent dyads completed the CHQ, a measure of HRQOL, at two time periods. Parent and adolescent reports of HRQOL were stable over time. ICCs between parent and adolescent reports were significant and moderate across most domains of HRQOL, with the exception of family cohesion, physical functioning, and bodily pain. However, mean differences indicated that parents perceived significantly worse self‐esteem and general health perceptions compared to their adolescents. Compared to normative data, parents reported significantly lower HRQOL across several domains, including adolescents’ physical functioning and the emotional impact of their adolescent’s condition on themselves. However, parents also reported higher levels of family cohesion. Results indicate that assessment of HRQOL for transplant recipients should include multiple reporters and that HRQOL as reported by adolescents and parents is generally stable over time without intervention. Further research is needed to understand factors related to differential HRQOL outcomes.     

Health‐related quality of life and sleep among Chinese children after living donor liver transplantation

LDLT is a well‐established treatment for most terminal liver diseases in children. Survival rates have improved, yet few studies have considered HRQoL or sleep problems in LDLT recipients. In this cross‐sectional study, we enrolled 51 children who had undergone LDLT in Renji Hospital. PedsQL^? 4.0 Generic Core Scales, PedsQL^? 3.0 Transplant Module, and Pediatric Sleep Questionnaire were used to assess outcomes. Of all participants, 11.8% (6/51) reported low total HRQoL scores. Participants’ scores on most HRQoL subscales were comparable to the scores of healthy children. However, compared with solid organ transplant recipients, LDLT recipients scored significantly lower in About My Medicines II (t = 3.092, p = 0.002) and Worry (t = 2.760, p = 0.006). Sleep problems (41.2%) were common among participants. Hierarchical regression analyses showed that SRBD accounted for significant variance in HRQoL on total generic HRQoL (R² = 0.446, p < 0.001), psychosocial health (R² = 0.372, p = 0.001), physical health (R² = 0.345, p = 0.003), total transplant‐specific HRQoL (R² = 0.514, p < 0.001), About My Medicines I (R² = 0.365, p = 0.013), My Transplant and Others (R² = 0.334, p = 0.005), Pain and Hurt (R² = 0.544, p < 0.001), Worry (R² = 0.401, p = 0.001), Treatment Anxiety (R² = 0.526, p < 0.001), How I Look (R² = 0.221, p = 0.040), and Communication (R² = 0.343, p = 0.012). In conclusion, sleep problems are non‐negligible in children after LDLT and predicted significant variance on HRQoL.     

Health‐related quality of life and bullying in adolescence

Objective: To investigate if adolescents’ HRQL (Health‐Related Quality of Life) is associated with experiences of school bullying. Method: A total of 758 adolescents completed a questionnaire to help examine HRQL and the prevalence of bullying. Results: Associations were found between being bullied and all of the examined aspects of HRQL. To be involved in bullying – both as a bully and bully/victim (both bully and victim) – is related to experiences of physical and emotional difficulties. Being bullied during the latter school years affects aspects of HRQL to a greater extent than being bullied during earlier school years. Conclusion: Peers have a pronounced influence on the adolescents’ life, which can be seen in the association between experiences of bullying and its association with HRQL. Being bullied is associated with significantly poorer ratings of HRQL for adolescents in nearly every aspect of day‐to‐day functioning and quality of life.     

Health‐related and diabetes‐related quality of life in Japanese children and adolescents with type 1 and type 2 diabetes

Background: The aim of this study was to assess (i) the health‐related quality of life (HR‐QOL) of primary, junior and high school children with type 1 and type 2 diabetes and to compare it with that of healthy school children; and (ii) to compare the diabetes‐related QOL (DR‐QOL) and the QOL of parents of children with diabetes, between type 1 and type 2 diabetes in Japan. Methods: Overall, 471 patients aged 9–18 years (368 with type 1 and 103 with type 2 diabetes) and their parents were involved. QOL was assessed using a self‐administered questionnaire. Results: The total score for HR‐QOL of primary and junior school children with type 1 diabetes was significantly higher than that of those with type 2 diabetes and healthy controls. However, there were no significant differences in high school children. Some subscales regarding HR‐QOL were significantly lower for children with type 2 diabetes than for children with type 1 diabetes or healthy controls. The DR‐QOL of children with type 1 and type 2 diabetes did not significantly differ. The Family Burden and Family Involvement were significantly greater in parents of children with type 1 diabetes. There were significantly positive correlations between HR‐QOL and DR‐QOL in both groups. In type 1 diabetes only, there were significant negative correlations between glycated hemoglobin and some subscales of the HR‐QOL and QOL of parents of children with diabetes, and weak positive correlation between glycated hemoglobin and Family Burden. Conclusions: The HR‐QOL of school children with type 1 diabetes was higher than that of those with type 2 diabetes and healthy school children. The QOL of school children with type 1 diabetes was not impaired.     

Health‐related quality of life in parents of pediatric solid organ transplant recipients in Japan

Few studies have examined HRQOL in pediatric Tx recipients’ parents. This study investigated HRQOL in these parents and relationships between HRQOL and perceived burden of nurturing, family functioning, and social support. Self‐report anonymous questionnaires and a survey of medical records were completed between September and December 2013. The SF‐36v2, which evaluates physical, psychological, and social health, was used to measure HRQOL. While values for physical and psychological health were higher than standard values (Cohen's d = 0.34 and 0.17, respectively), social health scores were lower (d = 0.21). “Parental consultation unrelated to donation” (standardized partial regression coefficient: β = ?0.52) was associated with physical health. “Family functioning” and “Commuting time between home and primary follow‐up hospital” (β = 0.57 and ?0.31) were related to psychological health. “Total score for perceived burden of nurturing” (β = ?0.31) was related to social health. Regarding parental HRQOL, while physical and psychological health was favorable, social health was impaired. In clinical practice, interventions targeting parents’ physical conditions and facilitation of community and family understanding and support to share recipients’ nurturing are important in improving parental HRQOL.     

Health‐related quality of life of former very preterm infants in adulthood

Aim: To assess health‐related quality of life of young adults born very preterm compared with a term control group. Methods: A cohort of preterm infants <1250 g and a term control group, both born between 1983 and 1985, were surveyed as adults at the median age of 23 years. Questionnaires including the Short Form 36 Health Survey (SF 36) and a modified lifestyle questionnaire assessed quality of life, health attitudes, height and weight, chronic diseases, medication and drug consumption. Results: Fifty‐two preterms and 75 controls matched for age and sex participated in the study. There were no significant differences in the quality of life as assessed by SF 36. Former preterms were significantly smaller than their term controls but not so for body mass index. The overall consumption of illicit drugs was significantly lower in former preterms. Moreover, former preterms went significantly less often in for sports. There was a trend for higher prevalence of chronic diseases in male compared to female preterms, but their use of medication was significantly lower. Conclusion: Adults born very preterm show no significant differences in their quality of life when compared to controls in early adulthood. However, based on their lifestyle and health disadvantages, male preterm subjects constitute a risk group when entering early adulthood with a clear need for continued attention.     

Health‐related quality of life in Swedish children and adolescents with limb reduction deficiency

Aim: To investigate health‐related quality of life (HRQoL) in young persons with limb reduction deficiency (LRD). Methods: One hundred and forty children with LRD aged 8–16 answered the DISABKIDS questionnaire for children with chronic health conditions. Of their parents, 137 answered a corresponding questionnaire concerning their child. Results: Compared to reference data from children with other health conditions, children with LRD showed higher overall HRQoL and higher HRQoL in all subscales except social exclusion. Overall, the results were not related to gender or age, but girls with longitudinal, bilateral or lower LRD reported significantly lower HRQoL in most subscales than girls with other forms of LRD. Unexpected attention and perceived physical appearance had a significant impact on HRQoL. There was poor agreement between parent and child report of the child’s HRQoL. Conclusion: Children and adolescents with limb reduction deficiency have a better HRQoL than children with other health conditions but there are subgroups of children who experience a significantly lower HRQoL than their peers. The difference between parent and child ratings should be considered in clinical practice.     

Health‐related quality of life and its determinants in children and adolescents born with oesophageal atresia

Aim: Following surgical correction in the neonatal period, patients born with oesophageal atresia have significant co‐morbidity, particularly in childhood. This study evaluates health‐related quality of life and its determinants such as concomitant anomalies and the presence of respiratory and/or gastro‐intestinal symptoms 6–18 years after repair of oesophageal atresia. Methods: Parents of 24 patients with oesophageal atresia completed the child health questionnaire for parents and 37 patients completed the child form. Gastro‐intestinal symptoms were assessed by a validated standardized reflux questionnaire. Results were compared with a healthy reference population. Results: Parents as well as patients themselves scored significantly lower on the domain general health perception. According to parents, general health perception was negatively affected by age at follow‐up and concomitant anomalies. Patients reported that reflux symptoms reduced general health perception. Conclusion: In this first study describing health‐related quality of life in children and adolescents born with oesophageal atresia, we demonstrated that general health remains impaired because of a high incidence of concomitant anomalies and gastrointestinal symptoms in patients with oesophageal atresia when compared with the healthy reference population.