The PedsQL™ Multidimensional Fatigue Scale in type 1 diabetes: feasibility, reliability, and validity

Background: The Pediatric Quality of Life Inventory (PedsQL™, Mapi Research Trust, Lyon, France; www.pedsql.org ) is a modular instrument designed to measure health-related quality of life and disease-specific symptoms in children and adolescents. The PedsQL Multidimensional Fatigue Scale was designed as a child self-report and parent proxy-report generic symptom-specific instrument to measure fatigue in pediatric patients. The objective of the present study was to determine the feasibility, reliability, and validity of the PedsQL Multidimensional Fatigue Scale in type 1 diabetes.
Methods: The 18-item PedsQL Multidimensional Fatigue Scale (General Fatigue, Sleep/Rest Fatigue, and Cognitive Fatigue domains) and the PedsQL 4.0 Generic Core Scales were administered to 83 pediatric patients with type 1 diabetes and 84 parents.
Results: The PedsQL Multidimensional Fatigue Scale evidenced minimal missing responses (0.3% child report and 0.3% parent report), achieved excellent reliability for the Total Fatigue Scale score (α= 0.92 child report, 0.94 parent report), distinguished between pediatric patients with diabetes and healthy children, and was significantly correlated with the PedsQL 4.0 Generic Core Scales supporting construct validity. Pediatric patients with diabetes experienced fatigue that was comparable to pediatric patients with cancer on treatment, demonstrating the relative severity of their fatigue symptoms.
Conclusions: The results demonstrate the measurement properties of the PedsQL Multidimensional Fatigue Scale in type 1 diabetes. The findings suggest that the PedsQL Multidimensional Fatigue Scale may be utilized in the standardized evaluation of fatigue in pediatric patients with type 1 diabetes.     

The PedsQL in pediatric cancer pain: a prospective longitudinal analysis of pain and emotional distress

The objective of this prospective study was to investigate the cross-sectional and longitudinal associations between pain and emotional distress in children and adolescents with cancer as measured by the Pediatric Quality of Life Inventory (PedsQL) Emotional Functioning and Pain Scales. The PedsQL 1.0 Generic Core Scales are multidimensional scales developed as the generic core measure to be integrated with the PedsQL Disease-Specific Modules. The PedsQL 1.0 Cancer Module was designed to measure pediatric cancer-specific health-related quality of life. The PedsQL Generic Core Scales, Emotional Functioning Scale and Cancer Module Pain Scale, were administered to 69 children and 59 adolescents and their parents at Time 1 and Time 2, which was 6 months on average after Time 1. Prospective hierarchical multiple regression analyses supported a longitudinal predictive model with Time 1 pain predicting Time 2 pain and Time 1 emotional distress predicting Time 2 emotional distress, respectively. Time 1 emotional distress did not predict Time 2 pain, and Time 1 pain did not predict Time 2 emotional distress. The results demonstrate that pediatric cancer pain and emotional distress, although associated cross-sectionally, are differentially predictive in prospective longitudinal analyses. These results suggest that both pain and emotional distress should be targeted for treatment interventions concurrently to enhance long-term health-related quality of life of the pediatric patient with cancer.     

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 (HRQoL) of children with type 1 diabetes mellitus (T1DM): self and parental perceptions

Kalyva E, Malakonaki E, Eiser C, Mamoulakis D. Health‐related quality of life (HRQoL) of children with type 1 diabetes mellitus (T1DM): self and parental perceptions. The aim of the study was to evaluate health‐related quality of life (HRQoL) in children and adolescents with type 1 diabetes mellitus (T1DM) in Greece compared with healthy controls and to identify the effect of age, gender, age of onset of disease, and metabolic control on perceptions of HRQoL. A total of 117 children and adolescents with T1DM aged 5–18, their parents, and 128 matched healthy children and adolescents participated. Children and adolescents completed PedsQL? 4.0 Generic Core Scales. Children and adolescents with T1DM also completed the PedsQL? 3.0 Diabetes Module, while their parents completed the proxy‐reports of both the PedsQL? 4.0 Generic Core Scales and the PedsQL? 3.0 Diabetes Module. The results demonstrated that children and adolescents with T1DM had lower general HRQoL compared with healthy matched children and adolescents. Parents of children and adolescents with diabetes reported that the illness has a greater affect on their children's lives than the children themselves. Finally, the results indicated that later age of onset of diabetes, less hyperglycemic episodes, lower glycosylated hemoglobin (HbA1c), older age, and male gender were associated with better general HRQoL and diabetes‐specific HRQoL. The findings have implications for designing effective therapeutic interventions aimed at improving the HRQoL of children and adolescents with T1DM.     

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.     

Effect of upper limb botulinum toxin-A therapy on health-related quality of life in children with hemiplegic cerebral palsy

Aim:   Currently, the use of upper limb botulinum toxin-A (UL BTX-A) is based on evidence of functional efficacy without supporting evidence of positive change in health-related quality of life (HRQOL). While function may improve, this cannot be directly correlated with an improvement in HRQOL. Most paediatric studies use caregiver/parent proxy reports. The inclusion of child self-reports is increasing as poor correlation with proxy reports is being demonstrated. This paper aims to study the effect of UL BTX-A therapy on HRQOL in children with hemiplegic cerebral palsy (CP).
Method:   Design: Pilot prospective randomised trial. Participants: 22 children with hemiplegic CP aged 7 years 0 month−13 years 11 months (12 treatment, 10 control). Treatment: One series BTX-A injections into UL. HRQOL assessed at baseline, and 1, 3 and 6 months post-injection by completion of Pediatric Quality of Life (PedsQL) 4.0 Generic Core Scales and PedsQL 3.0 CP Module. Outcome: 1. Change in PedsQL scores. 2. Concordance between child self-report and parent proxy-report scores.
Results:   No statistically significant difference between treatment and control groups was observed for any domain of HRQOL. Intraclass concordance was good for the PedsQL CP Module Daily Activities, and Speech and Communication scores ( P  = 0.0005).
Conclusion:   This pilot work adds to the emerging evidence that UL BTX-A therapy has no statistically significant effect on the HRQOL of children with hemiplegic CP. With the increasing use of this therapy in children with CP, further research across the broader CP population is needed to identify whether this therapy is indicated in other target populations. Both child and parent proxy reports should be collected when assessing HRQOL in this population.     

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.     

Quality of life in children with spinal cord injury.

PURPOSE: To compare reports of the child's quality of life (QOL) between children with spinal cord injury (SCI) and their parents using the Pediatric Quality of Life 4.0 Generic Scales (PedsQL), and assess agreement between parent and child responses. To examine the influence of level of injury on QOL and internal consistency reliability of the PedsQL in pediatric SCI. METHODS: Twenty-eight children (17 male children and 11 female children) between five and 13 years and their parents completed the PedsQL. RESULTS: Children rated their QOL better than their parents; however, there was good to excellent parent-child agreement. No differences were noted between children with tetraplegia and paraplegia. Low internal consistency reliability was obtained for various domains. CONCLUSIONS: In addition to using summary scores, specific ratings may raise important points for clinical decision-making. Results on internal consistency reliability suggest the need for condition-specific questionnaires for children with SCI.     

中文版儿童生命质量哮喘特异性量表的信度和效度评价

目的：评价简体中文版儿童生命质量（PedsQLTM）哮喘特异性量表家长报告的信度和效度。方法：采用 PedsQLTM 哮喘特异性量表家长报告量表及自设一般情况问卷,对重庆医科大学附属儿童医院哮喘中心就诊的 233 例哮喘患儿及其家长进行问卷调查。用克朗巴赫α系数考核其信度,分别用探索性因子分析、相关分析考核其效度。结果：中文版 PedsQLTM 哮喘特异性量表家长报告全量表、症状相关问题、治疗相关问题、担心相关问题、沟通相关问题的α系数分别为0.86、0.80、0.78、0.89和0.93,表明量表有较好的内部一致性。通过因子分析共提取7个公因子,与量表基本结构一致,主成分累积贡献率接近 66%。4个维度得分与所含条目得分间均有较强的相关关系(r=0.41~0.92, P＜0.01)。结论：中文版PedsQLTM 哮喘特异性量表家长报告有良好的信度和效度,与原语言版本一致,可适用于中国哮喘患儿健康相关生命质量评价。［中国当代儿科杂志,2010,12(12)：943-946］     

Quality of life of patients with spinal muscular atrophy: A systematic review

ObjectivesTo systematically review the literature of quality of life (QoL) of patients with spinal muscular atrophy (SMA), a rare, autosomal-recessive neuromuscular disease associated with extensive morbidity and elevated mortality.MethodsWe searched Embase, Web of Science, and PubMed for full-text, English-language articles (published between January 1, 2000 and July 31, 2018) reporting results from studies of QoL of patients with SMA. We excluded review and editorial articles, studies reporting results for samples comprising <5 patients (to allow for meaningful inference), and case reports/qualitative assessments.ResultsOf 824 identified articles, 15 met study criteria. Included publications contained data derived from samples from a total of 11 countries and three continents (Europe, North America, and South America). Estimates of the latent trait, primarily derived using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and the PedsQL 3.0 Neuromuscular Module, indicated impairment in patient QoL, in particular physical functioning. However, both patient self- and caregiver proxy-assessments varied markedly across studies and subgroups. Among adult individuals, the mean self-assessed EuroQol-5D-3L utility has been estimated at 0.16 for a pooled sample of patients with SMA type I, II, and III, and −0.01 for SMA type II. Little is known of the impact of available treatments, including nusinersen, on patient QoL.ConclusionsOur review show that QoL is impaired in SMA, mainly due to compromised physical health, but also reveal that little is known of the impact of the disease across different phenotypes and clinical interventions.     

Factors associated with health-related quality of life in pediatric cancer survivors

BACKGROUND: Childhood cancer survivors are at risk for late effects of disease and treatment that may be attributed to multiple causes. This study describes health-related quality of life (HRQOL) in childhood cancer survivors and identifies factors related to poor quality of life outcomes. PROCEDURE: Patients age 8-18 years, who attended the long-term information, follow-up, and evaluation (LIFE) clinic at Childrens Hospital Los Angeles during a 1-year time-period were eligible for the study. Eighty-six survivors (mean time off-treatment=7.8 years) completed the Pediatric Quality of Life Inventory 4.0 Generic Core Scales, a LIFE Clinic Intake Questionnaire and rated their fatigue using a 10-point scale. Oncology nurses independently rated subjects' late effects using a 3-point severity scale. Linear regression procedures were used to evaluate the association between demographic and medical factors and HRQOL. RESULTS: Fatigue and more severe late effects were associated with poorer physical functioning (fatigue, P<0.02; late effects, P<0.01). Fatigue, ethnic minority status, and a brain tumor diagnosis were associated with poorer psychosocial functioning (fatigue, P<0.0001; minority status, P<0.04; brain tumor, P<0.01). Fatigue was the only factor related to both poor physical and psychosocial HRQOL. CONCLUSIONS: Long-term follow-up clinics for childhood cancer survivors are in a unique position to monitor HRQOL over time. Factors associated with poorer HRQOL include fatigue, ethnic minority status, a brain tumor diagnosis, and more severe late effects. Future studies need to clarify relationships between ethnicity, socioeconomic status (SES), and HRQOL in cancer survivors.     

Fatigue mediates the relationship between emotional and cognitive functioning in children post-cancer treatment

Background/objectives

Children treated for cancer are at risk to develop cognitive problems. Insight in underlying associations with emotional functioning and fatigue can be used to optimize interventions. We therefore aim to study emotional functioning, fatigue, and cognitive functioning in children postcancer treatment and investigate whether fatigue mediates the relationship between emotional and cognitive functioning.

Design/methods

Emotional functioning, fatigue, and cognitive functioning were assessed in children post-cancer treatment using subscales of the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales, Multidimensional Fatigue Scale and Cognitive Functioning Scale. A one sample t-test was used to compare outcomes with general population peers and mediation analysis was used to address the effect of fatigue on the relationship between emotional and cognitive functioning.

Results

A total of 137 children (mean age: 13.6, SD ± 3.3 years; mean time since end of treatment: 7.1 months, SD ± 5.9) participated. Lower scores on emotional functioning (Cohen's d [D]: 0.4), fatigue (D: 0.8) and cognitive functioning (D: 0.6) were found (p < .001) in children post-cancer treatment than in peers. A medium association was found between emotional and cognitive functioning (standardized regression coefficient [β]: 0.27, p < .001), which was mediated by fatigue (β = 0.16).

Conclusions

Outcomes on emotional and cognitive functioning are decreased and fatigue is increased in children postcancer treatment. Fatigue mediates the relationship between emotional and cognitive functioning. Our results show the importance to focus on fatigue amongst stress as a target for intervention to improve cognitive functioning.     

Measuring health-related quality of life in Hungarian children attending a cardiology clinic with the Pediatric Quality of Life Inventory™

The aim of the study was to evaluate health-related quality of life (HRQoL) of Hungarian children attending a pediatric cardiology outpatient unit with the Pediatric Quality of Life Inventory™ (PedsQL™) questionnaire. The PedsQL™ Generic Core Scales and Cardiac Module were administered to 254 families including 195 children during a pediatric cardiology outpatient visit, and 525 families including 373 children from the general population were examined by the PedsQL™ Generic Core Scale by a postal survey. The relationships between PedsQL™ scores and patient characteristics were analyzed. Hungarian children attending a cardiology outpatient unit as an entire group and patients with severe heart diseases report significantly lower physical functioning than the general population, while more HRQoL dimensions are negatively affected according to the parents' opinion. Children with congenital heart disease of mild and great complexity also report impaired psychosocial functioning. HRQoL impairment is concentrated to the age of 5–7 years. Comparing our results with previous ones on U.S. pediatric cardiologic samples, we found significantly lower scores mainly for the physical functioning and heart symptoms subscales. This HRQoL study with an internationally well-validated instrument on children with heart disease in a Central European country highlights certain aspects of the health-care system and brings the possibility for the assessment of pediatric cardiology outcomes in a more comprehensive way.     

Measuring fatigue for children with cancer: development and validation of the pediatric Functional Assessment of Chronic Illness Therapy-Fatigue (pedsFACIT-F)

Fatigue is a major concern for cancer patients of all ages. The lack of an appropriate assessment tool has impeded our understanding of its prevalence and significance, specifically in the pediatric cancer population. This paper documents the reliability and validity of the pediatric Functional Assessment of Chronic Illness Therapy-Fatigue (pedsFACIT-F) in a comprehensive manner. The 11-item PedsFACIT-F was developed via literature review, feedback from patient/parent/clinician, and a face-to-face consensus meeting. Its reliability and validity were examined on the basis of data from 159 pediatric patients with cancer via classical test theory and Rasch analysis. Results showed that the pedsFACIT-F demonstrated good internal consistency (Cronbach alpha), acceptable item-total correlations, and met the unidimensionality assumption set by confirmatory factor analysis. All items had acceptable fit statistics in the Rasch analysis and demonstrated stable measurement properties by age, sex, and cancer type. Scores on the pedsFACIT-F significantly discriminated between patients with and without anemia and among patients with different functional status; clinically relevant minimally important differences were estimated accordingly. The pedsFACIT-F was significantly correlated to the PedsQL Multidimensional Fatigue Scale. In conclusion, the pedsFACIT-F demonstrates satisfactory reliability and validity and can be a useful tool in clinical trials and other research.     

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.     

Propiedades psicométricas de la versión en castellano del Cuestionario Calidad de Vida Pediátrica Módulo de Impacto Familiar (PedsQL FIM)

IntroductionThis study analysed the psychometric properties of the Spanish version of the Pediatric Quality of Life Questionnaire Family Impact Module (PedsQL FIM) in the Argentinian population.Patients and methodsThe sample included 232 caregivers, of who 108 were parents of children with chronic diseases (mean, 9.54; standard deviation [SD], 4.43) and 124 parents of children in the general population (mean, 12.37; SD, 4.6).ResultsWe assessed the validity of the instrument with the known-groups method, finding significant differences between the case and control groups in the overall and subscale scores (P < .01). We also assessed test validity by means of exploratory factor analysis, which yielded an 8-factor model that explained 74.03% of the variance. We assessed reliability with the Cronbach alpha and found a high internal consistency (α=.95).ConclusionThe PedsQL module proved to be a valid and reliable tool to assess the impact of a chronic paediatric condition on caregiver quality of life and family functioning.     

Reliability and validity of the Harris Infant Neuromotor Test

OBJECTIVE: To examine the reliability and validity of the Harris Infant Neuromotor Test (HINT), a screening tool that can be administered and scored in <30 minutes, with the goal of identifying neuromotor differences in infants aged 3 to 12 months. STUDY DESIGN: Infants, aged 3 to 12 months (n = 54), were assessed in 2 high-risk infant follow-up programs in Vancouver, British Columbia. Inter-rater, test-retest, and intra-rater reliability were examined. Concurrent and predictive validity of the HINT with the Bayley Scales of Infant Development-II (BSID-II) were evaluated by using the Pearson product-moment correlation. RESULTS: Intraclass correlation coefficients for reliability for the Total HINT Score ranged from 0.98 to 0.99. Concurrent validity of the HINT with the BSID-II Mental Scale during the first year was r = -0.73 (P <.01), and with the BSID-II Motor Scale, r = -0.89 (P <.01). The predictive relationships between the HINT and the BSID-II at 17 to 22 months were r = -0.11 for the BSID-II Mental Scale and r = -0.49 (P <.01) for the BSID-II Motor Scale. CONCLUSIONS: The HINT is reliable for screening infant neuromotor performance and has strong concurrent validity with the Bayley-II Mental and Motor Scales. HINT scores during the first year accounted for 24% of the variance of Bayley-II Motor scores at 17 to 22 months.     

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.     

Precision and sensitivity of the short-form pediatric enuresis module to assess quality of life (PEMQOL)

PurposeTo evaluate a derived short-form version of the Pediatric Enuresis Module to assess Quality of Life (PEMQOL) Child and Family Impact Scales, a survey intended for use in clinical practice and research as a means of continuous monitoring of the impacts of enuresis on the child and family.Materials and methodsThe full-length PEMQOL was completed by parents in two clinical trials (n = 143 and n = 397, respectively) and for children receiving care at five specialty clinics (n = 208). The short-form scales were derived using regression and factor analysis. Multitrait scaling analysis was used to evaluate item internal consistency and discriminant validity. Reliability was estimated using Cronbach's alpha. Clinical validity was computed by comparing the proportion of variance explained by the short-form scales relative to their respective full-length versions. Differences in scores were examined by: (1) less wetting episodes, (2) number of pads used and (3) changes over time.Results and conclusionsThe Child and Family Scales were reduced from 14 to 7 items and 17 to 9 items, respectively. Eighty six percent (median) of items in the Child Scale and 100% in the Family Scale met item level scaling criteria. Median alpha coefficients across seven sub-samples were 0.72 and 0.76, respectively. Relative validity estimates for the Family Scale ranged from 2.66 to 0.87. Findings for the Child Scale were lower and ranged from 0.78 to 0.54.     

Quality of life in children with retinoblastoma after enucleation in China

Objective

To study the quality of life of Chinese pediatric patients with retinoblastoma (RB) after enucleation and the influencing factors.

Methods

A questionnaire survey was performed on 71 cases of pediatric patients with RB after enucleation and 80 cases of healthy children, using the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL? 4.0).

Results

The social dimension scores, school dimension scores, and total scores for the PedsQL? 4.0 among the pediatric patients with RB were statistically significantly lower than those of healthy children. The influencing factors were unilateral/bilateral affected eyes, diagnosis age, and ocular prosthesis satisfaction.

Conclusion

Early discovery, timely treatment, increased eye salvage rate, and cosmetic effects of ocular prosthesis were key factors for increasing the quality of life of pediatric patients with RB. Attention should be paid to the health, social, and school development of pediatric patients with RB.