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.     

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.     

Quality of life in pediatric liver transplantation in a single‐center in South America

Sanchez C, Eymann A, De Cunto C, D’Agostino D. Quality of life in pediatric liver transplantation in a single‐center in South America.
Pediatr Transplantation 2010: 14: 332–336. © 2009 John Wiley & Sons A/S. Abstract: HRQOL in children after LT has not been systematically measured in transplant recipients from South American countries. The aim of this study was to determine the HRQOL using a validated measure for children. The CHQOL‐PF50 was completed by the parents of 54 patients after the clinical assessment. Subscale mean scores were compared with both a normal population (n = 274) and a group of chronic illness patients with Juvenile Idiopathic Arthritis (n = 23). Compared with the normal population, LT recipients had lower subscales scores for general health perceptions, role/social emotional, mental health, and parental impact on time. Bodily pain was significantly lower in our study group. Both mean physical and psychosocial summary scores were lower compared to the normal population but similar to the JIA group. Within the LT population, gender, original diagnosis, type of immunosuppression, type of transplant and time elapsed since LT did not significantly influence any of the summary scores. Our study showed LT children’s physical and psycho‐social areas were lower compared with those of the general population. LT children had less limitations due to pain. Family functioning appeared normal.     

Adherence and health-related quality of life in adolescent liver transplant recipients

Abstract:  Adolescence is a particularly high-risk period for non-adherence with post-transplant medical regimens. There remains a lack of research investigating factors related to non-adherence in adolescent LT recipients. The present study empirically assessed the relationship between adherence and HRQOL in adolescent LT recipients. Participants included 25 adolescents (mean = 15.1 yr, range 12–17.9) and their parent/guardian(s). Adherence was assessed using multiple indices including clinician-conducted interviews, rate of clinic attendance, and s.d. of consecutive tacrolimus blood levels. HRQOL was examined using self-report and parent-proxy report on well-validated assessment measures. Results indicated that 76% of participants were non-adherent on at least one measure of adherence, and HRQOL was significantly lower than normative data for healthy children. Tacrolimus s.d. were significant related to poor HRQOL across domains of physical, school, and social functioning. Non-adherent adolescents reported poorer health perceptions, self-esteem, mental health, family cohesion, and more limitations in social and school activities related to physical, emotional, and behavioral problems. These results suggest that empirically based assessment of HRQOL may help identify those at highest risk for behavior, emotional and school difficulties, as well as non-adherence. The examination of tacrolimus s.d. may also help identify patients who may benefit from intervention to promote adherence and HRQOL. Prospective investigations are necessary to further identify the impact of HRQOL on adherence and long-term health outcomes to further guide clinical intervention.     

Health-related quality of life in pediatric liver transplant recipients compared with other chronic disease groups

Limbers CA, Neighbors K, Martz K, Bucuvalas JC, Webb T, Varni JW, Alonso EM, on behalf of the Studies of Pediatric Liver Transplantation (SPLIT) Functional Outcomes Group (FOG). Health‐related quality of life in pediatric liver transplant recipients compared with other chronic disease groups.
Pediatr Transplantation 2011: 15: 245–253. © 2010 John Wiley & Sons A/S. Abstract: This cross‐sectional, multicenter cohort study compares the level of HRQOL of pediatric LT recipients to children with other chronic health conditions. LT sample included 873 children who survived at least 12 months following LT. Six chronic disease samples were compiled from numerous studies, including over 800 patients with JRA, type 1 diabetes, cancer in remission, cardiac disease, end‐stage renal disease, and inflammatory bowel disease. Generic HRQOL was measured from both the parental and patient perspective using the PedsQL? 4.0 Generic Core Scales. Pediatric LT patients reported better physical health than children with JRA. According to parents, pediatric LT recipients had better HRQOL than children on renal dialysis on all domains except school functioning. Across all domains but emotional functioning, pediatric LT recipients reported significantly lower HRQOL than children with type 1 diabetes. Overall, pediatric LT patients reported HRQOL comparable to that of children who had undergone renal transplantation and patients with cancer in remission. Pediatric LT patients manifested impaired HRQOL similar to that of children with chronic diseases and these data suggest that they face ongoing challenges that warrant monitoring and indicate a need for interventions to improve their HRQOL.     

Pediatric health-related quality of life after intestinal transplantation

As outcomes after ITx improve, greater emphasis is needed on HRQOL. The primary aims of this study were to (i) assess the feasibility of measuring HRQOL in pediatric ITx recipients, (ii) measure HRQOL using validated instruments, and (iii) compare HRQOL in ITx recipients to healthy normal (NL) children. The CHQ and Pediatric Quality of Life (PedsQL4.0) instruments were administered to both patients and parents at outpatient visits. All 24 eligible patients were enrolled. The median age at study enrollment was 6.0 yr (range: 2-18 yr), and the median time from transplant to study enrollment was 2.8 yr (range: 0.5-11.8 yr). The majority of subjects were male (58%), Latino (58%), and liver-inclusive (92%) recipients. For CHQ and PedsQL4.0, parental responses were significantly lower in multiple categories including physical health and social functioning compared to healthy norms. Patient responses were not different from NL using CHQ but using PedsQL4.0 were significantly lower in the school functioning subcategory and psychosocial health summary score. HRQOL as reported by children and families after ITx is significantly lower in multiple categories compared to NL.     

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.     

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.     

Factors predicting health‐related quality of life in pediatric liver transplant recipients in the functional outcomes group

Data from 997 pediatric LT recipients were used to model demographic and medical variables as predictors of lower levels of HRQOL. Data were collected through SPLIT FOG project. Patients were between 2 and 18 yr of age and survived LT by at least 12 months. Parents and children (age ≥ 8 yr) completed PedsQL? 4.0 Generic Core and CF Scales at one time point. Demographic and medical variables were obtained from SPLIT. HRQOL scores were categorized as “poor” based on lower 25% of scores for each measure. Logistic regression models were generated. Single‐parent households (OR 1.94, CI 1.13–3.33, p = 0.017), anti‐seizure medications (OR 3.99, CI 1.26–12.70, p = 0.019), and number of days hospitalized (OR 1.03, CI 1.01–1.06, p = 0.0067) were associated with lower self‐reported HRQOL. Parent data identified increasing age at transplant, age 5–12 yr at survey, hospitalization >21 days at LT, re‐operations, diabetes, and growth failure at LT as additional predictors of generic HRQOL. Male gender, single‐parent households, higher bilirubin levels at LT, and use of anti‐seizure medication predicted lower cognitive function scores. HRQOL following pediatric LT is related to medical and demographic variables.     

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.     

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.     

Physical activity experiences in children post–liver transplant: Developing a foundation for rehabilitation interventions

Physical Activity (PA) plays an important role in the physical and psychosocial health of children and is beneficial in the treatment and prevention of comorbidities associated with transplantation. Despite this, PA participation in pediatric liver transplant recipients remains low compared to healthy peers. This qualitative‐focused mixed‐methods study explored the PA experiences and parental perception of these experiences, including perceived facilitators and barriers to PA in children post–liver transplant. Eighteen participants (9 children [median age 10.8 years] and 9 parents) took part in semi‐structured interviews and completed the PedsQL Multidimensional Fatigue Scale and PAQ. Most children reported they were physically active (PAQ median 3.08 [IQR] 2.60‐3.51), participating in PA for its enjoyment, regardless of their level of motor proficiency. Levels of fatigue (median 65.28 [IQR] 56.25‐90.97) were higher than healthy norms and impacted PA participation in some children. Children and parents perceived PA as central to post‐transplant recovery and valued its social and mental health benefits; however, parents struggled with ongoing uncertainty and perceived physical vulnerability of their child. This study indicates the need for continuing PA support and education and provides valuable information for family‐centered interventions to increase PA and improve health outcomes in children post‐transplant.     

Parental functioning improves the developmental quotient of pediatric liver transplant recipients

Psychomotor development in pediatric liver transplant (LT) recipients depends on several factors. Our aim was to evaluate the importance of parental involvement and family dynamics on psychomotor development by assessing (i) children and parents individually, (ii) the parent–child relationship, and (iii) the correlation between parental functioning and patient outcome, all before and after LT. Age‐appropriate scales were used before and after LT. Twenty‐one patients, 19 mothers, and 16 fathers were evaluated. Developmental quotient (DQ): No subjects scored in the “very good” range. The proportion of children with deficits increased from LT to two yr: 17.6% vs. 28.6%. Subjects 0–2 yr were more likely to have normal DQ at transplant (66.7% vs. 50% for older children). Abnormal DQ was more prevalent two yr post‐LT in children older at LT (p = 0.02). The mother–child relationship was normal in 59% of families pre‐LT and in 67% at two yr. The relationship was more favorable when the child received a transplant as an infant (p = 0.014 at 12 months post‐LT). Normal DQ was associated with higher maternal global functioning score pre‐LT (p = 0.03). Paternal performance scores were higher than maternal scores. Children transplanted after two yr of age suffer greater long‐term deficits than those transplanted as infants.     

Health-related quality of life in intensively treated young patients with type 1 diabetes

Abstract:  This study aimed to analyse the impact of the disease and treatment on health-related quality of life (HRQOL) in intensively treated young patients with diabetes. Our main hypothesis was that metabolic control, gender, age and socio-economic status predict HRQOL. All children and adolescents (n = 400, 191 girls) and parents in a geographic population of two paediatric clinics in Sweden [mean age 13.2 yr, ±SD 3.9, range 2.6–19.6; mean duration of diabetes 5.1 yr, ±SD 3.8, range 0.3–17.6; yr mean haemoglobin A1c (HbA1c) 7.1%, ±SD 1.2, range 4.0–10.7] received the DISABKIDS questionnaire, a validated combined chronic generic and condition-specific HRQOL measure for children, and the EuroQol-5D questionnaire. Parents as proxy perceived HRQOL lower than their children. Adolescents with separated parents reported lower generic HRQOL (GeHRQOL) and diabetes-specific HRQOL (DiHRQOL) than those with parents living together (p = 0.027 and p = 0.043, respectively). Adolescent girls reported lower GeHRQOL (p = 0.041) and DiHRQOL (p = 0.001) than boys did. Parents of girls <8 yr of age reported lower DiHRQOL (p = 0.047) than did parents of boys <8 yr. In addition, a difference was found in HRQOL between centres. Intensive insulin therapy did not seem to lower HRQOL. If anything, along with better metabolic control, it increased HRQOL. A correlation between DiHRQOL and HbA1c was found in adolescents (r = −0.16, p = 0.046) and boys aged 8–12 yr (r = −0.28, p = 0.045). We conclude that the diabetes team can influence the HRQOL of the patients as there was a centre difference and because HRQOL is influenced by glycaemic control and insulin regimen. Girls seem to need extra support.     

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.     

The impact of modifiable family factors on glycemic control among youth with type 1 diabetes

Objective:  To identify modifiable family factors impacting glycemic control in youth with type 1 diabetes (T1DM) beyond the anticipated physical, developmental, and behavioral issues associated with adolescence.
Study design:  In 153 youth (aged 8–16 yr) with T1DM duration of 6.3 ± 3.5 yr and average hemoglobin A1c (HbA1c) of 8.4 ± 1.4%, we examined modifiable family factors that might impact adherence to diabetes management and, in turn, influence glycemic control. Youth and parents completed surveys that assessed diabetes-specific knowledge, negative affect related to blood glucose monitoring (BGM), and parental-perceived burden of diabetes care. Clinician report and chart review provided data on growth, pubertal development, and diabetes management tasks. Glycemic control was measured as HbA1c.
Results:  In bivariate analyses, higher parental diabetes-specific knowledge (p < 0.0001), less youth negative affect related to BGM (p = 0.0005), and less parental-perceived burden (p = 0.0008) were associated with lower HbA1c. In a multivariate model controlling for demographic and diabetes-specific variables, these three factors remained independent and significant predictors of HbA1c (R² = 0.31 and p < 0.0001). Higher parental knowledge, less youth negative affect, and less parental burden predicted lower HbA1c, while youth knowledge and parental negative affect did not.
Conclusion:  To attain optimal glycemic control, treatment programs for youth with T1DM should include ongoing efforts to reinforce parental knowledge of diabetes tasks, promote positive youth affect related to diabetes management, and acknowledge and reduce parental-perceived burden of diabetes management.     

Physical activity and health related quality of life in children following kidney transplantation

Abstract:  Participation in PA is often diminished in children with CKD. Limited research exists on exercise tolerance/capacity but no studies to date have investigated lifestyle PA and its determinants in these children. The aim of this study was to investigate level of PA and potential physiological and psychological associations in a group of pediatric KTx recipients compared with CS. Twenty KTx and 33 CS participated. PA was measured by PAQ. HRQOL (PedsQL 4.0) and CY-PSPP were also measured. BMI and WC was recorded in all subjects; GFR, BP and immunosuppressants in KTx. Body measurements indicated the two groups were similar: 25% KTx and 24% CS had BMI >85th percentile. KTx were less physically active than CS in total exercise minutes (p = 0.005). CS reported higher HRQOL than KTx (p = 0.001). Higher perceptions of HRQOL were significantly correlated with higher number of steps/day in both groups (p = 0.034). KTx showed significantly lower perceptions of sports competence (p = 0.007) and physical conditioning (p = 0.001) than CS. Higher PAQ activity scores were significantly correlated with higher perceptions of body attractiveness (p = 0.019), Sport (p = 0.003) and Conditioning (p = 0.001). These results suggest that PA may play a role in overall well-being and HRQOL in KTx.     

Experiences of adolescent lung transplant recipients: A qualitative study

Many young transplant recipients experience psychological distress and adjustment difficulties, yet there is little research investigating lung transplantation from the recipients’ perspective. This qualitative study aimed to explore experiences of young people who underwent lung transplantation. Semi‐structured interviews were conducted with six lung transplant recipients (aged 15‐18). Interviews were analysed using IPA, a qualitative research approach examining how people make sense of their major life experiences. The analysis revealed three master themes: “Living with Dodgy Lungs” outlined how participants dealt with their experiences, managing through accepting or discussing their feelings with others, although talking was often difficult. “The Big Deal” reflected participants’ experiences of the process, their expectations, and the contrast of their lives pre‐ and post‐transplant. Inherent in their accounts was the profound meaning ascribed to transplantation, the emotional turmoil, and impact on their lives. “A Sense of Self” illustrated participants’ developing identities within their social contexts and at times isolating experiences. The results highlight key areas where adolescent lung transplant recipients could be supported by clinicians, enabling the promotion of psychological well‐being. Examples include supporting identity integration post‐transplant, facilitating social inclusion, considering alternative means of support, and involving adolescents in healthcare decisions.