Familial associations of intense preoccupations,an empirical factor of the restricted,repetitive behaviors and interests domain of autism

Background: Clinical heterogeneity of autism likely hinders efforts to find genes associated with this complex psychiatric disorder. Some studies have produced promising results by restricting the sample according to the expression of specific familial factors or components of autism. Previous factor analyses of the restricted, repetitive behaviors and interest (RRBI) domain of autism have consistently identified a two‐factor model that explains a moderate amount of variance. The identification of additional factors may explain more variance in the RRBI domain and provide an additional component of autism that may help in the identification of underlying genetic association. Methods: We conducted factor analyses of RRBI symptoms with a sample that included verbal subjects meeting full criteria for autism aged 5 to 22 years (n = 245). Among affected sibling pairs (n = 126) we examined the familial aggregation of the identified factors. We also examined the associations of the factors with autism‐related personality traits in fathers and mothers (n = 50). Results: The previously identified two‐factor model – insistence on sameness (IS) and repetitive stereotypic motor behaviors (RSMB) – was replicated in our sample. Next, a second factor analysis that included the item for verbal rituals resulted in a four‐factor model – IS, ‘simple’ RSMB, ‘complex’ RSMB, and a fourth factor including symptoms associated with intense preoccupations (IP). Of these four, both IS and IP were significantly familial among affected siblings, but only IP was significantly correlated with the broader autism phenotype traits of rigidity and aloofness in fathers. Conclusions: The results support previous evidence for the IS factor, its familiality, and the identification of IP as an additional strong candidate trait for genetic studies of autism.     

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.     

Inequities in Children's Reading Skills: The Role of Home Reading and Preschool Attendance

ObjectiveChildren from socioeconomically disadvantaged backgrounds have poorer learning outcomes. These inequities are a significant public health issue, tracking forward to adverse health outcomes in adulthood. We examined the potential to reduce socioeconomic gaps in children's reading skills through increasing home reading and preschool attendance among disadvantaged children.MethodsWe drew on data from the nationally representative birth cohort of the Longitudinal Study of Australian Children (N = 5107) to examine the impact of socioeconomic disadvantage (0–1 year) on children's reading skills (8–9 years). An interventional effects approach was applied to estimate the extent to which improving the levels of home reading (2–5 years) and preschool attendance (4–5 years) of socioeconomically disadvantaged children to be commensurate with their advantaged peers, could potentially reduce socioeconomic gaps in children's reading skills.ResultsSocioeconomically disadvantaged children had a higher risk of poor reading outcomes compared to more advantaged peers: absolute risk difference = 20.1% (95% confidence interval [CI]: 16.0%–24.2%). Results suggest that improving disadvantaged children's home reading and preschool attendance to the level of their advantaged peers could eliminate 6.5% and 2.1% of socioeconomic gaps in reading skills, respectively. However, large socioeconomic gaps would remain, with disadvantaged children maintaining an 18.3% (95% CI: 14.0%–22.7%) higher risk of poor reading outcomes in absolute terms.ConclusionThere are clear socioeconomic disparities in children's reading skills by late childhood. Findings suggest that interventions that improve home reading and preschool attendance may contribute to reducing these inequities, but alone are unlikely to be sufficient to close the equity gap.     

Cross-Cultural Validation Study of the Japanese Version of the ABILOCO-Kids in Ambulatory Children With Cerebral Palsy Using Rasch Analysis

Aims: To determine the structural validity, construct validity, cross-cultural validity, internal consistency and test–retest reliability of the Japanese version of the ABILOCO-Kids in children with cerebral palsy. Methods: One-hundred sixteen parents of children with cerebral palsy (Gross Motor Function Classification System level I [n?=?66], II [n?=?32], and III [n?=?18]) reported on walking ability using the Japanese version of the ABILOCO-Kids. For test–retest reliability, 23 participants were evaluated. Results: The mean ABILOCO-Kids logit score was 2.48 (range –7.44 to 5.83). Rasch analysis and principal component analysis were used to determine the structural validity. The construct validity was confirmed on the basis of differences in the ABILOCO-Kids scores among the Gross Motor Function Classification System levels. Cronbach’s α and the item-to-total correlation coefficient supported the internal consistency. The intra-class correlation coefficient was 0.96, standard error of measurement 0.56 and minimal detectable change 1.55. The cross-cultural validity analyses showed differential item functioning according to the analyses of the invariance of item difficulty and person’s ability estimates. Conclusions: The ABILOCO-Kids is a reliable and valid measure of walking ability in children with cerebral palsy in Japan. The lack of evidence on cross-cultural validity indicates we should interpret results cautiously in cases of international comparison.     

Young Children's Participation and Environment Measure: Swedish Cultural Adaptation

Aim: To culturally adapt and evaluate the psychometric properties of the Young Children's Participation and Environment Measure (YC-PEM) for use by caregivers of Swedish children with and without disabilities, aged 2–5 years. Methods: Thirteen cognitive interviews and two focus groups with caregivers of children with and without disabilities were conducted to evaluate the cultural relevance of YC-PEM content for use in Sweden. Per participant feedback, a revised version of the Swedish YC-PEM was created and pilot tested with caregivers of children with disabilities (n = 11) and children with typical development (n = 22). Results: User feedback informed content revisions to 7% of items. Internal consistency estimates of the Swedish YC-PEM pilot version were acceptable and ranged from .70 to .92 for all but two of the YC-PEM scales. Mean percentage agreement between raters ranged from 47% to 93% across YC-PEM scales for inter-rater, and 44% to 86% for test-retest. One of twelve YC-PEM scales revealed significant group differences between young children with and without disabilities. Conclusions: This study contributes preliminary evidence for the use of some scales within a culturally adapted YC-PEM in Sweden. Further validation with larger samples will allow for parametric testing to evaluate its psychometric properties.     

Psychometric Evaluation of the ‘Evidence Based Practice Competencies Questionnaire – Cerebral Palsy’

Aim: To understand whether knowledge translation activities are effective, good measurement of practice is required. This study investigated the psychometric properties of a self-report measure of allied health practitioner (AHP) evidence-based behaviors when working with children with cerebral palsy. Methods: Construct validity and reliability studies were undertaken for the 12-item Evidence Based Practice Competency Questionnaire – Cerebral Palsy (EBP-CQ-CP) using the Consensus-based Standards of Measurement Instruments methods. Factor analysis tested construct validity. Weighted Kappa tested chance-corrected agreement for each item and intra-class correlation coefficients (ICC) the reliability of factors derived in the validity study. Results: In the validity study 259 AHP completed the EBP-CQ-CP on occasion 1, and 228 on occasion 2. In the reliability study 46 AHP completed the questionnaire twice. Exploratory factor analysis determined the EBP-CQ-CP contained two scales: ‘communicating evidence based expectations’ and ‘evidence based assessment practices’. Confirmatory factor analysis using data from the second occasion of assessment supported the findings. Excellent consistency in ratings across factor scores were obtained from 46 pairs of raters: Factor 1, ICC = 0.93 (95% Confidence Interval 0.88–0.96); Factor 2, ICC = 0.94 (95% Confidence Interval 0.88–0.97). Conclusions: This study supports the interpretation of the EBP-CQ-CP in a clinically meaningful and psychometrically robust manner.     

Psychometric properties of the Swedish PedsQL, Pediatric Quality of Life Inventory 4.0 generic core scales

Aim:  To study the psychometric performance of the Swedish version of the Pediatric Quality of Life Inventory (PedsQL) 4.0 generic core scales in a general child population in Sweden.
Methods:  PedsQL forms were distributed to 2403 schoolchildren and 888 parents in two different school settings. Reliability and validity was studied for self-reports and proxy reports, full forms and short forms. Confirmatory factor analysis tested the factor structure and multigroup confirmatory factor analysis tested measurement invariance between boys and girls.
Results:  Test-retest reliability was demonstrated for all scales and internal consistency reliability was shown with α value exceeding 0.70 for all scales but one (self-report short form: social functioning). Child-parent agreement was low to moderate. The four-factor structure of the PedsQL and factorial invariance across sex subgroups were confirmed for the self-report forms and for the proxy short form, while model fit indices suggested improvement of several proxy full-form scales.
Conclusion:  The Swedish PedsQL 4.0 generic core scales are a reliable and valid tool for health-related quality of life (HRQoL) assessment in Swedish child populations. The proxy full form, however, should be used with caution. The study also support continued use of the PedsQL as a four-factor model, capable of revealing meaningful HRQoL differences between boys and girls.     

ITP-QoL Questionnaire for Children with Immune Thrombocytopenia: Italian Version validation's

Background: The ITP-QoL is a disease-specific questionnaire for the assessment of health-related quality of life (HRQoL) in children with immune thrombocytopenia (ITP) and their parents. The aim of this study was to test the psychometric characteristics of the ITP-QoL in the Italian pediatric population in terms of validity and reliability. Procedure: Children aged 8–16 years with acute or chronic ITP and their parents were recruited in Italy. Participants completed the ITP-QoL together with other patient-reported outcomes (PROs). Reliability was calculated using Cronbach's alpha. Convergent validity was determined by means of the Pearson correlation coefficients. Results: A total of 91 ITP patients, mean age of 12.11 ± 2.47 years, and their parents participated; 61.5% of the patients were female. Two patients had acute ITP and 30.2% had a moderate to severe status of ITP. Cutaneous symptoms were more frequent than mucosal symptoms. Due to item and scale analyses 20 items were deleted from the original ITP-QoL. Internal consistency of the ITP-QoL was found to be good with Cronbach's alpha exceeding α = 0.70 for all but one subscale. Concerning convergent validity “moderate” to “high” negative correlations were found between ITP-QoL and KINDL subscales. The ITP-QoL was able to discriminate between clinical subgroups such as number of days lost at school due to ITP and hospitalization. Conclusions: Our study was able to demonstrate that the Italian version of ITP-QoL (for children aged 8–16 years) is a valid and reliable instrument for the assessment of HRQoL in children with ITP.     

Psychometric Evaluation of the Young Children's Participation and Environment Measure (YC-PEM) for use in Singapore

Aims: To estimate the psychometric properties of a culturally adapted version of the Young Children's Participation and Environment Measure (YC-PEM) for use among Singaporean families. Methods: This is a prospective cohort study. Caregivers of 151 Singaporean children with (n = 83) and without (n = 68) developmental disabilities, between 0 and 7 years, completed the YC-PEM (Singapore) questionnaire with 3 participation scales (frequency, involvement, and change desired) and 1 environment scale for three settings: home, childcare/preschool, and community. Setting-specific estimates of internal consistency, test-retest reliability, and construct validity were obtained. Results: Internal consistency estimates varied from .59 to .92 for the participation scales and .73 to .79 for the environment scale. Test-retest reliability estimates from the YC-PEM conducted on two occasions, 2–3 weeks apart, varied from .39 to .89 for the participation scales and from .65 to .80 for the environment scale. Moderate to large differences were found in participation and perceived environmental support between children with and without a disability. Conclusions: YC-PEM (Singapore) scales have adequate psychometric properties except for low internal consistency for the childcare/preschool participation frequency scale and low test-retest reliability for home participation frequency scale. The YC-PEM (Singapore) may be used for population-level studies involving young children with and without developmental disabilities.     

Psychosocial Assessment Tool 2.0_General: validity of a psychosocial risk screener in a pediatric kidney transplant sample

Pai ALH, Tackett A, Ittenbach RF, Goebel J. Psychosocial Assessment Tool 2.0_General: Validity of a psychosocial risk screener in a pediatric kidney transplant sample.
Pediatr Transplantation 2012: 16: 92–98. © 2011 John Wiley & Sons A/S. Abstract: To present the preliminary psychometric properties of the PAT2.0_GEN, a brief, caregiver completed screener of psychosocial for children who were recipients of kidney transplants. Caregivers of 45 children and adolescents with kidney transplants completed the PAT2.0_GEN and the PedsQL. Internal consistency and predictive validity of the PAT2.0 were examined. Internal consistency for the PAT2.0_GEN Total score was strong. Internal consistency for the PAT2.0_GEN subscales ranged from 0.31 to 0.82. Evidence supporting convergent validity was observed; higher PAT2.0_GEN scores were significantly associated with lower caregiver‐ and self‐rated patient quality of life and poorer family communication. PAT2.0_GEN scores were also associated with an increased likelihood that a patient received or had been independently referred for psychological services within two yr of completing the PAT2.0_GEN. The PAT2.0_GEN Total score is a promising screening tool for psychosocial risk in the pediatric kidney transplant population.     

Screening for psychosocial distress amongst war-affected children: cross-cultural construct validity of the CPDS

Background: Large‐scale psychosocial interventions in complex emergencies call for a screening procedure to identify individuals at risk. To date there are no screening instruments that are developed within low‐ and middle‐income countries and validated for that purpose. The present study assesses the cross‐cultural validity of the brief, multi‐informant and multi‐indicator Child Psychosocial Distress Screener (CPDS). Methods: The CPDS data of total samples in targeted catchment areas of a psychosocial care program in four conflict‐affected countries (Burundi n = 4193; Sri Lanka n = 2573; Indonesia n = 1624; Sudan n = 1629) were studied to examine the cross‐cultural construct validity of the CPDS across settings. First, confirmatory factor analyses were done to determine the likelihood of pre‐determined theory‐based factor structures in each country sample. Second, multi‐sample confirmatory factor analyses were done within each country sample to test measurement equivalence of the factor structure as a measure of construct validity. Results: A 3‐factor structure reflecting the theoretical premises of the instrument (e.g., child distress, child resilience and contextual factors) was found in the samples from Burundi, Sri Lanka and Indonesia, albeit with context specific deviations. The robustness of the 3‐factor structure as an indicator of construct validity was confirmed within these three samples by means of multi‐sample confirmatory factor‐analyses. A 3‐factor structure was not found in the Sudan sample. Conclusions: This study demonstrates the comparability of the assessment by the CPDS of the construct ‘non‐specific psychosocial distress’ across three out of four countries. Robustness of the factor structure of the CPDS within different samples refers to the construct validity of the instrument. However, owing to context‐specific deviations of inter‐item relationships, the CPDS scores cannot be compared cross‐culturally, a finding that confirms the need for attention to contextual factors when screening for non‐specific psychosocial distress.     

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］     

Transplantation and innate immunity: the lesson of natural killer cells

Aim

This study examined the psychometric properties and the replicability of De Vellis's (1993) Parent Health Locus of Control (PHLOC) scales in an Italian sample.

Method

The Italian version of PHLOC was administered to 470 mothers of birth to 3-year-old children.

Results

Varimax rotated confirmatory factor analysis identified the six original subscales, namely Child, Divine, Fate, Media, Parental, and Professional influences over child health. Internal consistency of the subscales was good (α > .70), and test-retest correlations were adequate (r > .80). More highly educated mothers rated media influence as most important. No differences were found considering children's age, gender, and birth order.

Conclusion

The results offer good evidence of the cross-cultural validity of the PHLOC scales, an instrument that can be useful in interventions with families by the health care practitioners to prevent neglectful childrearing practices.     

Development of an instrument to measure parents' preferences and goals for the treatment of attention deficit-hyperactivity disorder

ObjectivesTo describe the development and validation of an instrument to measure parents’ attention deficit–hyperactivity disorder (ADHD) treatment preferences and goals.MethodsParents of children 6 to 12 years of age diagnosed with ADHD in the past 18 months were recruited from 8 primary care sites and an ADHD treatment center (autism excluded). A 16-item medication, 15-item behavior therapy preference scale and a 23-item goal scale, were developed after a review of the literature, 90 parent and clinician semistructured interviews, and input from parent advocates and professional experts were administered to parents. Parent cognitive interviews confirmed item readability, clarity, content, and response range. We conducted an exploratory factor analysis and assessed internal consistency and test-retest reliability and construct and concurrent validity.ResultsWe recruited 237 parents (mean child age 8.1 years, 51% black, 59% from primary care, 61% of children medication naive). Factor analyses identified 4 medication preference subscales (treatment acceptability, feasibility, stigma, and adverse effects, Cronbach’s α 0.74–0.87); 3 behavior therapy subscales (treatment acceptability, feasibility, and adverse effects, α 0.76–0.83); and 3 goal subscales (academic achievement, behavioral compliance, and interpersonal relationships, α 0.83–0.86). The most strongly endorsed goal was academic achievement. The scales demonstrated construct validity, concurrent validity (r = 0.3–0.6) compared with the Treatment Acceptability Questionnaire and Impairment Rating Scale and moderate to excellent test–retest reliability (intraclass coefficient = 0.7–0.9).ConclusionsWe developed a valid and reliable instrument for measuring preferences and goals for ADHD treatment, which may help clinicians more easily comply with new national treatment guidelines for ADHD that emphasize shared decision making.     

The Infant Feeding Intentions scale demonstrates construct validity and comparability in quantifying maternal breastfeeding intentions across multiple ethnic groups

Research tools that are comparable across ethnic groups are needed in order to understand sociodemographic disparities in breastfeeding rates. The Infant Feeding Intentions (IFI) scale provides a quantitative measure of maternal breastfeeding intentions. IFI score ranges from 0 (no intention to breastfeed) to 16 (very strong intentions to fully breastfeed for 6 months). The objective of this study was to examine intra‐ and inter‐ethnic validity of the IFI scale. The IFI scale was administered to 218 white non‐Hispanic, 75 African‐American, 80 English‐speaking Hispanic, 62 Spanish‐speaking Hispanic and 64 Asian expectant primiparae. Participants were asked their planned duration of providing breast milk as the sole source of milk (full breastfeeding). The IFI scale was examined for intra‐ethnic internal consistency and construct validity and for inter‐ethnic comparability. For all five ethnic categories, principal component analysis separated the scale into the same two factors: intention to initiate breastfeeding and intention to continue full breastfeeding. Across ethnic categories, the range in Cronbach's alpha was 0.70–0.85 for the initiation factor and 0.90–0.93 for the continuation factor. Within each ethnic category, IFI score increased as planned duration of full breastfeeding increased (P < 0.0001 for all). Within the planned duration categories of <1, 1–3, 3–6 and ≥6 months, the median IFI score by ethnic category ranged from (low–high) 5–8, 9–10, 12–14 and 16–16, respectively. The IFI scale provides a valid measure of breastfeeding intentions in diverse populations of English‐ and Spanish‐speaking primiparae, and may be a useful tool when researching disparities in breastfeeding practices.     

Parental depressive symptoms and children's sleep: the role of family conflict

Background: We used a multi‐method and multi‐informant design to identify developmental pathways through which parental depressive symptoms contribute to children’s sleep problems. Environmental factors including adult inter‐partner conflict and parent–child conflict were considered as process variables of this relation. Methods: An ethnically and socioeconomically diverse sample of children (n = 268) participated (M age = 9.44 years, SD = 8.61 months). Children wore actigraphs for 7 consecutive nights and also reported on their sleep problems. Results: Higher levels of maternal depressive symptoms were associated with children’s sleep/wake problems. Higher levels of paternal depressive symptoms were associated with shorter time in bed and fewer sleep minutes. Inter‐partner conflict and parent–child conflict were mechanisms of effects in the associations between maternal depressive symptoms and children’s actigraphy‐based and self‐reported sleep problems. Conclusions: Findings build on this scant literature and highlight the importance of identifying pathways of risk and familial and environmental influences on children’s sleep problems.     

Cross-Cultural Validation of the Inventory of School Motivation (ISM) in the Asian Setting: Hong Kong and the Philippines

Students’ achievement goals in school have received increasing research attention because they have been shown to be important in predicting important outcomes. As such, there has been a growing interest in measuring and comparing them across different cultural groups. However, these comparisons cannot be made until validity evidence has been attained to support the use of an instrument in the new cultural setting. In this study, we investigated the cross-cultural applicability of the Inventory of School Motivation (ISM, McInerney et al. American Educational Research Journal 34:207-236, 1997) in the Hong Kong Chinese and Philippine contexts using both within-network and between-network approaches to construct validation. The ISM measures four types of achievement goals: mastery, performance, social, and extrinsic goals. 1,406 high school students from Hong Kong (n = 697) and the Philippines (n = 709) participated. Results of the within-network test showed that the ISM had good internal consistency reliability and the confirmatory factor analysis provided support for the hypothesized four-factor model. Multigroup confirmatory factor analyses supported invariance of factor loadings across the two samples. The between-network test also indicated that these achievement goals correlated systematically with different aspects of students’ self-concepts. These findings support the applicability of the ISM among Hong Kong Chinese and Filipino students.     

Validation of the Revised Child Version of the Assessment of Computer Task Performance

Objective. The purpose of this study was to examine test-retest reliability, internal consistency, and construct validity of the revised child version of the Assessment of Computer Task Performance. The subjects were 155 children of 5 to 11 years of age who did not have any visual or motor impairment. Children 5 through 9 years of age were administered the revised test, which included some additional tasks. Children 10 and 11 years of age were administered selected tasks from the adult version. A subgroup of 52 children were administered the test for the second time to examine test-retest reliability. Intra-class correlations for the mean time to complete two trails indicated moderate to good test-retest reliability (0.66–0.91). The alpha coefficient for tasks administered to children 5 through 9 years of age (0.85) supports internal consistency. Removal of one task increased the alpha coefficient to 0.79 for tasks administered to children 10 and 11 years of age. Three factors explained 84% of the total variance in scores of children 5–9 years of age and 75% of the variance in scores of children 10 and 11 years of age. The mean time to complete keyboard tasks decreased with age and the mean time to mouse tasks decreased between 5 and 9 years. Conclusion. The results provide evidence of test-retest reliability, internal consistency, and construct validity of the revised Assessment of Computer task Performance.     

HEDEN Pain Scale: A Shortened Behavioral Scale for Assessment of Prolonged Cancer or Postsurgical Pain in Children Aged 2 to 6 Years

Few observational scales are available for assessing chronic or recurrent pain in children with cancer because overt behavioral signs of chronic pain dissipate as time passes, making them difficult to detect reliably. The Douleur Enfant Gustave Roussy (DEGR) scale developed by Gauvain-Piquard to monitor prolonged pain in children with cancer aged 2–6 years is currently the only validated tool available for this purpose, but is time consuming and difficult to use in daily clinical practice. To shorten composite measurement scales, we developed the Hétero Evaluation Douleur Enfant (HEDEN) scale from the DEGR scale. We present here the process and validation of this scale. Expert consensus was used for the elaboration of HEDEN: 5/10 DEGR items were chosen with three rating levels. Concurrent validity was tested in a first cohort with correlation analysis between HEDEN and DEGR. The HEDEN scale was then validated in a second cohort. In the first step, the study (59 children) showed acceptable correlation between DEGR and HEDEN (r = 0.5), with good reliability (α = 0.61), and interrater agreement (r = 0.62). Subsequent validation in 48 children showed a significant correlation between DEGR and HEDEN (r = 0.6). Reliability was good (α = 0.75), with excellent interrater agreement [r = 0.67 (95% CI: 0.48–0.79)]. On average, the evaluation took 23 minutes (SD = 10.4) for DEGR versus 4.42 minutes (SD = 5.9) for HEDEN. This study shows a good correlation between HEDEN and DEGR scales. HEDEN allows accurate assessment of prolonged pain in young children with cancer.     

Development of a culturally appropriate health-related quality of life measure for human immunodeficiency virus-infected children in Thailand

Aim: Develop a reliable and valid self-report health-related quality of life (HRQOL) instrument for human immunodeficiency virus (HIV)-infected children in Thailand. Methods: The Thai Quality of Life for HIV-infected Children instrument, the ThQLHC (an HRQOL measure that uses the Pediatric Quality of Life Inventory as a generic core and a 17-item HIV-targeted scale), was developed and administered cross-sectionally to 292 HIV-infected children in Thailand. The disease-targeted scale included HIV-related symptoms, ability to adhere with their treatment regimens and self-image. The internal consistency reliability (Cronbach's α) and construct validity of the ThQLHC scales were then evaluated. Results: Internal consistency reliability coefficients ranged from 0.57 to 0.82, with four of five scales reaching the minimal acceptable level (>0.70). Significant associations were found between poor HRQOL and poor self-rated disease severity, care giver's rated overall quality of life, cluster of differentiation (CD) 4 percent and plasma HIV ribonucleic acid level. Conclusion: Reliable and valid disease-targeted HRQOL measures for HIV-infected children are essential in the assessment of therapeutic effectiveness. The findings of this cross-sectional survey provide support for the reliability and validity of the ThQLHC as an HRQOL outcome measure for HIV-infected Thai children.