Health-related quality of life and intellectual functioning in children in remission from acute lymphoblastic leukaemia

AIM: To evaluate the health-related quality of life (HRQOL) and intellectual functioning of children in remission from acute lymphoblastic leukaemia (ALL). METHODS: Children and adolescents treated for ALL (n = 40; mean age 11.8 years, range 8.5-15.4) and healthy controls (n = 42; mean age 11.8, range 8.11-15.0) were assessed through a cross-sectional approach using the Pediatric Quality of Life inventory (PedsQL) 4.0 and the Wechsler Intelligent Scale for children-III (WISC-III). RESULTS: Children and adolescents treated for ALL reported on average significantly lower HRQOL compared to healthy controls: the mother's proxy-report showed significantly lower HRQOL for their children, as did the father's proxy-report, measured by the PedsQL 4.0 Total Scale and Psychosocial Health Scale. Intellectual functioning as measured by the WISC-III Full Scale IQ was below that of the control group, but still within the normal range. CONCLUSIONS: Significant differences found between children treated for ALL and their control group for the PedsQL Psychosocial Health Scale may indicate that the complex illness-treatment experience can make children more vulnerable with regard to psychosocial sequels, in spite of otherwise satisfactory physical and intellectual functioning. Follow-up programs that target the psychosocial health of children in remission from ALL should be implemented.     

The reliability of the Health Related Quality Of Life questionnaire PedsQL 3.0 Diabetes Module™ for Swedish children with type 1 diabetes

Aim: The overall aim of the study was to assess reliability and accomplish a limited validation of the Pediatric Quality of Life Inventory 3.0 Diabetes Module Scales (PedsQL 3.0), Swedish version in a sample of Swedish children diagnosed with Type 1 diabetes (T1DM). A secondary aim was to assess whether the children’s Health Related Quality of Life (HRQOL) was associated with children’s gender and age and whether the child self‐ and parent proxy reports were consistent. Methods: One hundred and thirty families from four diabetes centres participated in this study. The Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL 4.0) and the PedsQL 3.0 were administered to 108 children (aged 5–18 years) with T1DM and 130 parents (of children with T1DM aged 2–18 years). Results: The internal consistency of the PedsQL 3.0, Swedish version, reached or exceeded Cronbach’s alpha values of 0.70 for both child self‐ and proxy reports‐ and parent proxy‐reports. The PedsQL 4.0 and PedsQL 3.0 were highly correlated (r = 0.76), indicating convergent validity. The parents reported lower diabetes‐specific HRQOL than the children themselves (p < 0.01). The girls in the study reported lower psychological functioning and treatment adherence compared with the boys (p < 0.05). The oldest children (between 13 and 18 years of age) reported significantly lower diabetes‐specific HRQOL, as compared with younger children (p < 0.05). Conclusions: PedsQL 3.0 Diabetes Module can be used as a valuable tool for measuring diabetes‐specific HRQOL in child populations, both in research and in clinical practice.     

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.     

Self-reported assessment of health-related quality of life in children who underwent restorative proctocolectomy with ileal J-pouch anal anastomosis for ulcerative colitis

Purpose

To clarify health-related quality of life (HRQOL) by self-evaluation after restorative proctocolectomy with ileal J-pouch anal anastomosis (IPAA) in children with ulcerative colitis, a questionnaire using the Pediatric Quality of Life Inventory? 4.0 (PedsQL) was administered.

Methods

The PedsQL was administered to 13 consecutive children (mean age 14.5 years) who underwent IPAA between 2005 and 2010 in our hospital and age-matched healthy controls. The mean duration after IPAA was 2.5 years (range 0.08–6 years) at the time of this study. Healthy children completed the same questionnaire by retrospective imaging during the past 1 month by the PedsQL evaluation policy.

Results

Patients’ total score and each functioning score after IPAA reached the same levels as those in healthy controls. Soiling, pouchitis occurrence, and bowel movements had no significant relationship to the PedsQL total score and each functioning score.

Conclusions

Interference of physical activity, emotional status, and social life caused by refractory ulcerative colitis (UC) worsens patients’ HRQOL. IPAA could resolve these problems in children with UC and result in an HRQOL comparable with that in healthy children.     

Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation

Anthony SJ, Hebert D, Todd L, Korus M, Langlois V, Pool R, Robinson LA, Williams A, Pollock‐BarZiv SM. Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation.
Pediatr Transplantation 2010:14:249–256. © 2009 John Wiley & Sons A/S. Abstract: Kidney transplantation is an optimal therapy for pediatric patients with end‐stage kidney disease. This pilot study sought to examine multidimensional QOL outcomes after kidney transplant using VAQOL and General Health, the PedsQL 4.0, PedsQL End Stage Renal Disease Module, and Impact on Family Module. Sample included 12 adolescents aged 13–18 yr and their parent; three children aged eight to 12 yr and their parent; and six parents of children aged two to seven yr. All were 73 months post transplant. The median age at transplant was 9.3 yr and median time since transplant was 3.2 yr. VAQOL mean was 7.7/10 (child report) and 7.3/10 (parent report); the mean general health was 7.4/10. High levels of fatigue (≥5/10) were reported in 43%. PedsQL subscale mean values were lower than healthy reference scores. PedsQL Renal Module demonstrated great concern with physical appearance and physical symptoms (thirst and headaches), difficulty with peer and family interaction, and school disruption. Low scores on parental emotional function depict the negative impact of transplant on family functioning. Discordance exists between child and parental reports of QOL. Prospective studies are needed to explore multidimensional QOL to improve long‐term outcomes after pediatric kidney transplant.     

The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity.

BACKGROUND: The application of health-related quality of life (HRQOL) as a pediatric population health measure may facilitate risk assessment and resource allocation, the tracking of community health, the identification of health disparities, and the determination of health outcomes from interventions and policy decisions. OBJECTIVE: To determine the feasibility, reliability, and validity of the 23-item PedsQL 4.0 (Pediatric Quality of Life Inventory) Generic Core Scales as a measure of pediatric population health for children and adolescents. DESIGN: Mail survey in February and March 2001 to 20 031 families with children ages 2-16 years throughout the State of California encompassing all new enrollees in the State's Children's Health Insurance Program (SCHIP) for those months and targeted language groups. METHODS: The PedsQL 4.0 Generic Core Scales (Physical, Emotional, Social, School Functioning) were completed by 10 241 families through a statewide mail survey to evaluate the HRQOL of new enrollees in SCHIP. RESULTS: The PedsQL 4.0 evidenced minimal missing responses, achieved excellent reliability for the Total Scale Score (alpha =.89 child;.92 parent report), and distinguished between healthy children and children with chronic health conditions. The PedsQL 4.0 was also related to indicators of health care access, days missed from school, days sick in bed or too ill to play, and days needing care. CONCLUSION: The results demonstrate the feasibility, reliability, and validity of the PedsQL 4.0 as a pediatric population health outcome. Measuring pediatric HRQOL may be a way to evaluate the health outcomes of SCHIP.     

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.     

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.     

The impact of realized access to care on health-related quality of life: a two-year prospective cohort study of children in the California State Children's Health Insurance Program

OBJECTIVE: To examine the effect of realized access to care (problems getting care, access to needed care) on health-related quality of life (HRQOL) in the California State Children's Health Insurance Program. STUDY DESIGN: This was a prospective cohort study (n = 4,925; 70.5% [3438] had complete data). Surveys were taken at enrollment and after 1 and 2 years in the program. Parents and children reported HRQOL (PedsQL 4.0 Generic Core Scales). Repeated-measures analysis accounted for within-person correlation and adjusted for baseline PedsQL, baseline realized access, race/ethnicity, language, chronic health condition, and having a regular physician. RESULTS: Realized access to care during the prior year was related to HRQOL for each subsequent year. Foregone care and problems getting care were associated with decrements of 3.5 (P < .001) and 4.5 (P < .001) points for parent proxy-report PedsQL and with decrements of 3.2 (P < .001) and 4.4 (P < .001) points for child self-report PedsQL. Improved realized access resulted in higher PedsQL scores, continued realized access resulted in sustained PedsQL scores, and foregone care resulted in cumulative declines in PedsQL scores. CONCLUSIONS: Realized access to care is associated with statistically significant and clinically meaningful changes in HRQOL in children enrolled in the California State Children's Health Insurance Program.     

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.     

Quality of Life Measurement for Children with Life-Threatening Conditions: Limitations and a New Framework

About 500,000 children are coping with life-threatening conditions (LTC) in the United States every year. Different service programs such as an integrated pediatric palliative care program may benefit health-related quality of life (HRQOL) which is a great concern of this children population and their families. However, evidence is limited about the appropriate HRQOL instruments for use. This study aims to validate psychometric properties of a generic HRQOL instrument, the Pediatric Quality of Life (PedsQL) 4.0, for children with LTC. The parent proxy-report was used. We conducted a telephone interview to collect data of 257 parents whose children had LTC and were enrolled in Medicaid. We used standard psychometric methods to validate the PedsQL: scale reliability, item-domain convergent/discriminant validity, and known-groups validity. We also conducted Rasch analysis to assess construct validity. Results suggest that the PedsQL did not demonstrate valid psychometric properties for measuring HRQOL in this population. Rasch analysis suggests that the contents of the items in all domains did not appropriately cover the latent HRQOL of children with LTC. We document several methodological challenges in using a generic instrument to measuring HRQOL and propose a new framework to improve HRQOL measures for children with LTC. The strategies include revising the content of existing items, designing new items, adding important themes (e.g., financial challenge), and applying computerized adaptive test to better select appropriate items for individual children with LTC.     

Health-related quality of life and cognitive functioning in pediatric short stature: comparison of growth-hormone-naïve,growth-hormone-treated,and healthy samples

The objective of this study was to evaluate the impact of short stature on generic health-related quality of life (HRQOL) and cognitive functioning in pediatric patients. Eighty-nine youth, 48 who were initially seen with short stature (SS group) and 41 with a history of short stature being treated with growth hormone (GHT group) and one of their legal guardians participated in the study. HRQOL and cognitive functioning were assessed using the PedsQL™ 4.0 Generic Core Scales and PedsQL™ Cognitive Functioning Scale. Comparisons were made between the study groups and with a previously obtained matched healthy sample. For the GHT group, height Z score was found to be a positive predictor of overall HRQOL while duration of GHT was found to be a predictor of physical functioning. For the SS group, the difference between midparental height Z score and height Z score was found to be a negative predictor of overall HRQOL and cognitive functioning. Comparison with the healthy sample demonstrated significant negative impact on HRQOL for child self-report and on HRQOL and cognitive functioning for parent proxy-report in both study groups. The GHT group had a significantly higher child self-reported Physical Functioning score than the SS group (effect size (ES) = 0.52, p < 0.05). In conclusion, the GHT group had slightly better HRQOL scores than the SS group, but the difference was not statistically significant. Both groups had significantly lower HRQOL and cognitive functioning scores than healthy sample. Predictors of HRQOL and cognitive functioning found in this study lend support to the use of the PedsQL™ 4.0 Generic Score Scales and PedsQL™ Cognitive Functioning Scale in routine assessment of children with short stature in order to identify children at increased risk for impaired HRQOL and cognitive functioning.     

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.     

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.     

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 obese adolescents is decreased and inversely related to BMI

AIM: To compare health related quality of life (HRQoL) of obese adolescents with normal weight controls and to explore the relation between Body Mass Index (BMI) and HRQoL. METHODS: Cross-sectional study in 31 adolescents (12-18 years), referred for obesity, in comparison with 62 age and sex matched normal weight controls. HRQoL was assessed using the PedsQL 4.0 and Child Health Questionnaire (CHQ). The main outcome measure was difference in HRQoL between obese and control subjects. RESULTS: Mean BMI (SD) in patients versus controls was 34.9 (8.8) versus 19.5 (2.2) kg/m2. In obese adolescents, lower HRQoL in three PedsQL and seven CHQ scales was found (p < 0.05). Variance in HRQoL scales explained by obesity ranged from 8% (CHQ Physical Functioning) to 28% (CHQ Global Health). BMI z-score was inversely correlated with five PedsQL and 10 CHQ scales while the percentage of scale variance explained by BMI z-score ranged from 7% (CHQ Physical summary scale) to 33% (CHQ Global Health). CONCLUSION: HRQoL in obese adolescents is less than in normal weight controls, and is partially explained by obesity-related comorbidity. Overall HRQoL was inversely associated with BMI. Hence, HRQoL is an important indicator of impact of obesity and effect of interventions, complementary to clinical variables.     

Factors associated with low physical activity levels following pediatric cardiac transplantation

Banks L, Dipchand AI, Manlhiot C, Millar K, McCrindle BW. Factors associated with low physical activity levels following pediatric cardiac transplantation. Abstract: Background: Objectively measured MVPA levels following pediatric cardiac transplantation are unknown despite physical health implications. We sought to determine factors associated with MVPA in a pediatric cohort who had undergone cardiac transplantation. Methods: Study assessments included maximal exercise testing (VO₂max), accelerometry, and physical activity (HAES) and functional health status (CHQ‐PF50) questionnaires. Results: Participants (n = 20, 60% male, age: 11.8 ± 3.0 yr old) had a VO₂max of 28.5 ± 6.8 mL/kg/min (%‐predicted: 65 ± 14%) and maximal heart rate of 154 ± 16 beats/min (%‐predicted: 73 ± 7.5%). Participants performed a median of 7.6 min/day (Q1 4.0 min/day, Q3 11.0 min/day) of MVPA. Each additional year of age at transplantation was associated with a decrease of 1.9 [1.0] min/day of MVPA (p = 0.07). Predicted VO₂max, maximal power output, male sex, and age at study enrollment were not associated with an increase in MVPA. Parents’ perception of their child’s functional health status (CHQ‐PF50) was lower on general health (p < 0.01) and family activity (p < 0.01) domains relative to a population‐based cohort of parents reporting on healthy children. Conclusion: Pediatric cardiac transplantation recipients may be indicated to participate in cardiac rehabilitation to optimize physical activity levels.     

Health-related quality of life of children and adolescents prior to hematopoietic progenitor cell transplantation: diagnosis and age effects

BACKGROUND: The health-related quality of life (HRQOL) may vary among children before undergoing hematopoietic progenitor cell transplantation (HPCT). This study examined the HRQOL of children scheduled for HPCT, the effects of diagnosis and age on HRQOL, and the convergent validity of one generic and two disease-specific measures of HRQOL. PROCEDURE: The sample consisted of 111 children (mean age = 10.4 years) diagnosed with acute lymphoblastic leukemia (ALL; 22%), other leukemias (26%), neuroblastoma (19%), other solid tumors (18%), and hematologic disorders (15%). Convergence validity was tested with 67 children (mean age = 10.3 years) who had an equivalent distribution of diagnoses except for neuroblastoma (12%). The Child Health Questionnaire (CHQ), a generic measure, and the Pediatric Oncology Quality of Life Scale (POQOL) and the Play Performance Scale (PPS), disease-specific measures, were completed by one parent prior to HPCT. RESULTS: Compared to the norms for healthy children, the CHQ Physical summary scores for every diagnostic subgroup and the CHQ Psychosocial summary scores for ALL were poorer. Compared to the cancer norms for Total POQOL and PPS scores, scores for ALL and neuroblastoma were the poorest. These measures also revealed that adolescents' HRQOL was perceived to be worse than children's. Total POQOL scores showed strong convergent validity with CHQ Physical and Psychosocial scores and moderate convergent validity with the PPS scores. CONCLUSIONS: Based on parental reports, children treated for ALL and neuroblastoma appear to be at the greatest risk for poor HRQOL before undergoing HPCT, and adolescents seem to be more compromised than younger children, based on parental reports. The POQOL measure seems to be the best predictor of HRQOL. These results have clinical implications for the care of children undergoing HPCT.     

Health-related quality of life: changes in children undergoing chemotherapy

BACKGROUND: Information regarding changes in the health-related quality of life (HRQL) of children during chemotherapy is scarce. Furthermore, there exists a general lack of consensus as to which measures are best suited to assess changes in HRQL in this population. The purpose of this study is to compare the responsiveness of 3 pediatric HRQL measures: the Pediatric Quality of Life Inventory (PedsQL), the Child's Health Questionnaire (CHQ), and the Health Utilities Index (HUI). METHODS: Consecutive pediatric oncology patients and their parents completed the questionnaires at 1-week intervals for a total of 4 weeks, starting on the third day of the patient's chemotherapy treatment cycle. RESULTS: Twenty-nine patients were enrolled with the majority (62%) having a diagnosis of leukemia with an average age of 9 years. The parent proxy reports from time 1 to 4 showed a mean change in the PedsQL of 17 for the generic core scale and 12 for the cancer specific module. The mean change in CHQ physical functioning scale was 6, while the psychosocial scale was only 2, while the HUI 2 was 3 (x100), and HUI 3 was 4 (x100). There was significantly more change in the PedsQL generic scores when compared with the HUI 2 and 3 and the CHQ psychosocial scale (P<0.01). CONCLUSIONS: When measuring HRQL repeatedly in a heterogeneous population, the PedsQL is the measure most responsive to change.     

Mood and Health-Related Quality of Life Among Pediatric Patients With Heart Failure

Adult patients with heart failure (HF) commonly experience depression, with morbid and mortal consequences. However, mood disorders in pediatric patients with HF are poorly understood. This study examined mood and health-related quality of life (HRQOL) in children with HF and compared them cross-sectionally with those of healthy control subjects and heart transplant (Htx) recipients with good heart function. The 62 participants in this study were divided into three groups: HF subjects (n = 15), Htx subjects (n = 23), and healthy control subjects (n = 24). The HF subjects all had chronic HF with a left ventricular ejection fraction lower than 35 %. All the participants completed the Mini-Mental State Examination (MMSE), the Childhood Depression Inventory (CDI), and the Pediatric Quality-of-Life Inventory Cardiac Module (PedsQL CM). Overall, the MMSE scores and CDI subscale scores were similar for all the groups. The HF and Htx participants scored similarly on the PedsQL CM subscales for HRQOL, treatment anxiety, perceived physical appearance, cognitive function, and communication. However, the HF group had a significantly lower HRQOL related to heart problems and treatment than the Htx group. The prevalence of depression among children with HF is not as high as reported in the adult HF literature. However, certain aspects of HRQOL experienced by pediatric HF patients still suffer, especially those related to heart problems and treatment. Health-related QOL tended to be better for the Htx participants than for the HF participants. Exploring developmental and psychosocial outcomes is critical for patients with HF, especially because it has an impact on vital developmental, academic, and social outcomes.