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1.
The functional status and health-related quality of life (HRQOL) of children who survive liver transplantation (LT) have not been well documented. The purpose of this study was to determine the functional status and HRQOL in this population using a validated measure for children, the Child Health Questionnaire-Parent Form 50 (CHQ-PF50). METHODS: The CHQ-PF50 instrument was completed by the parents of 55 children who agreed to participate in a mailing survey. Subscale scores for the sample were compared with those of a published normal population (n = 391). RESULTS: Study sample characteristics were: 87% Caucasian, 54.5% female, mean age at survey was 9.6 years (range, 5-17 years). Responding caregivers were 95% biologic parents and 93% female. Compared with the normal population, LT recipients had lower subscale scores for general health perceptions (P < 0.0005), emotional impact on parents (<0.0005) and disruption of family activities (0.0005). The mean physical summary score of the LT recipients was lower than that of the normal population 48.1 +/- 12.1 (P = 0.005), but the mean psychosocial summary score was similar 48.8 +/- 11.9 (P = 0.156). Within the LT population, the original diagnosis (biliary atresia vs. other), type of LT (living donor vs. cadaveric), age at LT, z score for height, and hospital days did not significantly influence any of the subscale scores. CONCLUSIONS: Children who have survived LT have functional outcomes in the physical domain that are lower than those of normal children. Self-esteem and mental health in this group appeared normal. The parents in this sample experienced more emotional stress and disruption of family activities than did parents in a normal population.  相似文献   

2.
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.  相似文献   

3.
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.  相似文献   

4.
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.  相似文献   

5.
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.  相似文献   

6.
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.  相似文献   

7.
To measure HU and HRQOL in pediatric liver transplant (LT) recipients, a cross‐sectional study of patient‐parent dyads was conducted. Direct HU were assessed in 48 adolescents ≥12 years using SG and TTO techniques. Indirect HU were measured by Health Utility Index 2 and HUI3 for subjects ≥12 years and CHU9D for ≥7 years. Patients reported HRQOL using PedsQL? GC and PedsQL? TM. A total of 108 dyads participated (55.6% female; 73.2% Caucasian; 42.6% biliary atresia; 35.2% living donor; 37.0% Medicaid). Mean age at survey was 13.6 ± 3.5 years, and time from LT was 8.9 ± 4.9 years. 61.2% were on monotherapy, 25 (23.2%) had acute rejection within 3 years, and 15 (13.9%) had a biliary obstruction within 5 years. Mean indirect HU and HRQOL scores by child report were lower than norms (P < .001). LRD recipients had higher PedsQL? GC, PedsQL? TM, and HUI3 scores (P < .01). HU in pediatric LT recipients are lower than norms. Availability of HU scores for post‐transplant health states will enable measurement of quality‐adjusted life years for future comparative effectiveness studies.  相似文献   

8.
BACKGROUND:Long-term survival after paediatric liver transplantation is now the rule rather than the exception. Improving long-term outcomes after transplantation must consider not only the quantity but also the quality of life years restored.OBJECTIVES:To characterize health-related quality of life (HRQOL) of LT recipients ≥15 years after paediatric LT.METHODS:Recipients of a paediatric LT performed before December 1996 in a single institution with continuous follow-up at either the paediatric or adult partner centre were identified. Patients with severe developmental or neurological impairment were excluded. HRQOL was assessed using the Pediatric Quality of Life Inventory 4.0, the Medical Outcomes Study Short Form-36 version 2 and the Pediatric Liver Transplant Quality of Life Tool.RESULTS:A total of 27 (67% male) subjects (mean age 24.3±6.7 years [median 23.2 years; range 16.6 to 40.3 years]) participated. The median age at transplant was 1.7 years (range 0.5 to 17.0 years). Seven (26%) participants underwent retransplantation. Seventeen (63%) participants were engaged in full-time work/study. Mean Short Form-36 version 2 scores included physical (49.6±11.1) and mental (45.3±12.5) subscale scores. The mean score for the disease-specific quality of life tool for paediatric liver transplant recipients (the Pediatric Liver Transplant Quality of Life Tool) was 64.70±15.2. The physical health of the young adults strongly correlated with level of involvement in work/study (r=0.803; P<0.05).CONCLUSIONS:The self-reported HRQOL of participants <18 years of age was comparable with a standardized healthy population. In contrast, participants between 18 and 25 years of age had HRQOL scores that were more similar to a group with chronic illness. Participants engaged in full-time work/study experienced enhanced physical health.  相似文献   

9.
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.  相似文献   

10.
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.  相似文献   

11.
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.  相似文献   

12.
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.  相似文献   

13.
Background: The aim of the present study was to investigate recent overweight and obesity prevalence rates for Lebanese adolescents, and to examine differences in physical activity, screen time (sum of time spent in front of TV, computer, and videogames), and health‐related quality of life (HRQOL) for the first time among normal, overweight, and obese adolescents. Methods: One thousand Lebanese adolescents (14–18 years old) from nine schools participated in the study. Height, weight, physical activity, screen time, and HRQOL variables were assessed using validated self‐report questionnaires. Results: A total of 7.8% of boys and 1.75% of girls were obese, and 22.5% of boys and 12.47% of girls were overweight. Normal‐weight boys reported higher physical activity scores at health clubs than obese boys. Normal‐weight girls reported higher leisure time and total physical activity scores than obese girls. In the normal‐weight group, boys reported higher total screen time than girls. Normal‐weight boys reported higher physical functioning scores than their obese peers. Normal‐weight girls reported higher physical functioning and average HRQOL scores than obese girls. Normal‐weight and overweight boys reported higher average HRQOL scores than girls. Conclusion: The present study is the first to provide data on physical activity, screen time, and HRQOL among Lebanese adolescents. Despite the need for further research, all those concerned with the pediatric population are urged to develop and implement effective strategies to increase physical activity and improve HRQOL among adolescents based on the present findings.  相似文献   

14.

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.  相似文献   

15.
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.  相似文献   

16.
Our primary goal was to assess health related quality of life (HRQOL) at transplantation and 1 yr after transplantation in pediatric liver transplant patients aged less than 5 years. We conducted a prospective longitudinal study of HRQOL in pediatric liver transplant recipients, aged less than 5 years to define the impact of liver transplantation on HRQOL and identify factors that predict HRQOL after transplantation. The infant toddler health status questionnaire (ITHQ) was completed at the time of listing for liver transplantation and at 6 and 12 months after liver transplantation. The primary outcome measures were the subscale scores that comprise ITHQ. The mean age (+/-s.e.m.) of the enrolled patients (n = 45) at transplantation was 1.4 (+/-1.2) yr. Thirty-eight (84%) of the enrolled patients completed the study. The highest mean baseline scores of 78.6 (+/-3.3) were for global mental health (GlobalMH). ITHQ subscale scores increased steadily after transplantation. The greatest increase was in the first 6 months after transplant. At 1 yr after transplantation, there were significant increases in all of the ITHQ subscale scores except for GlobalMH. ITHQ subscales were similar for patients who received LDLT compared with those who received cadaver donor liver transplantation (CDLT) at baseline and a year after transplant. Time elapsed as transplantation was a significant predictor of functional health in all of the models generated. Scores for general health (GH), global health (GGH), parental time-impact (PT) and parental time-emotion (PE) were higher for male children. Family cohesion (FC) improved with time elapsed since transplant and increased number of inpatient days. HRQOL improves after transplantation in all of our patients irrespective of the donor type. Functional health scores were higher in patients with normal serum bilirubin at 1 yr post-transplant. Assessment of HRQOL should be an integral part of care for liver transplant patients and their caregivers.  相似文献   

17.
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.  相似文献   

18.
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.  相似文献   

19.
IntroductionThis study sought to determine if changes in parent-reported health-related quality of life (HRQOL) in children with sickle cell disease (SCD-SS) occurred after participation in a nutritional supplementation study and to compare HRQOL responses with normative scores from non-White children.MethodParents of children with SCD-SS between the ages of 5 and 13 years completed the Child Health Questionnaire (CHQ-PF50) at baseline and at 12 months.ResultsFor the 47 children (8.6 ± 2.4 yrs, 43% female), baseline Child Health Questionnaire scale scores were significantly lower than normative scale scores for parental emotional impact, general health, and overall physical health, but they were higher for mental health. After the nutritional supplementation study, overall physical health and parental emotional impact improved to normative levels. Furthermore, physical role functioning significantly improved.DiscussionParticipation in a nutritional study had a positive impact on parent-reported HRQOL physical scores in children with SCD-SS. More research is necessary to develop care providers' awareness and adequate HRQOL interventions for this population.  相似文献   

20.
OBJECTIVE: Changes in health-related quality of life (HRQOL) and self-esteem were studied in children with idiopathic short stature (ISS) participating in a study on the effect of growth hormone treatment. STUDY DESIGN: Prepubertal children (n = 36) with ISS were randomly assigned to a treatment or control group. Children with ISS, their parents, and the pediatrician completed HRQOL and self-esteem questionnaires 3 times in 2 years. RESULTS: At the start, children with ISS did not have lower scores than the norm population, except for social functioning HRQOL. The pediatrician reported an improvement of HRQOL in the treatment group, the parents reported no change, and the children in the treatment group reported the same, or sometimes even worse, HRQOL or self-esteem than the control group. Changes related to the child's satisfaction with height and hardly to growth itself. CONCLUSION: The assumption that growth hormone treatment improves HRQOL in children with ISS could not be supported in this study.  相似文献   

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