Child Health Questionnaire-Child Form Research Articles

Frequency of Vaso-Occlusive Crises Is Associated with Health-Related Quality of Life in Pediatric Patients with Sickle Cell Disease: US Cross-Sectional Surveys of Adolescents and Caregivers

▪Introduction: Pediatric patients with sickle cell disease (SCD) experience considerable disease-related burden. SCD-related morbidity is characterized by vaso-occlusive crises (VOCs), which are acutely painful events that may cause chronic and potentially life-threatening complications, contributing to the early mortality associated with SCD. Two cross-sectional observational surveys were fielded to evaluate the relationship between VOC frequency and health-related quality of life (HRQoL) in pediatric patients with SCD in the United States (US).Methods: Surveys were administered in 2 populations: adolescents with SCD ages 12-17 years (n=247) and caregivers (n=167) of children with SCD ages 2 months-11 years in the US. Adolescent participants first provided assent to participate, and their guardians provided permission. Adolescents then completed an online survey that included the Child Health Questionnaire-Child Form 45 (CHQ-CF45) and the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) pain and sleep impact domains. After providing informed consent, caregivers completed an online survey assessing the HRQoL of their child with SCD; survey content was tailored to the age of their child. Caregivers of children ages 5-11 completed the CHQ-Parent Form 50 (CHQ-PF50) and the Patient-Reported Outcomes Measurement Information System (PROMIS) pain interference and sleep disturbance short forms (8a and 4a, respectively). Caregivers of children <5 completed the Infant/Toddler Quality of Life Questionnaire-Short Form 47 (ITQOL-SF47). Children were stratified according to the number of VOCs they experienced in the past 12 months (0-2 VOCs; ≥3 VOCs), and a series of general linear models were conducted to examine the relationship between VOC frequency and HRQoL domain scores, with children's age included as covariate. Statistical significance was evaluated using a significance level of 0.05; p-values were also compared to a Benjamini-Hochberg adjusted critical value.Results: In adolescents ages 12-17, higher frequencies of VOCs were associated with lower HRQoL: adolescents with more frequent VOCs reported greater impacts than adolescents with less frequent VOCs across all domains of HRQoL measured by the CHQ-CF45, including general health, physical functioning, role/social limitations, mental health, and family activities (p<0.05 for all) (Table 1). Pain and sleep (ASCQ-Me domains) were also associated with VOC frequency: greater impacts were observed among adolescents with more frequent VOCs (p<0.001 for both). Similar to adolescents, children < 12 who experienced more frequent VOCs exhibited lower HRQoL as reported by caregivers on most CHQ-PF50 and ITQOL-SF47 domains except those related to behavior and the ITQOL-SF47 change in health domain (Table 2). Children with more frequent VOCs also experienced greater pain interference and sleep disturbance than those with less frequent VOCs (p<0.01 for both PROMIS domains; Table 2). Among caregivers of children ages 5-11, those whose children experienced more frequent VOCs reported greater impacts on CHQ-PF50 parental time/emotions and family activity domains than those whose children experienced less frequent VOCs (p<0.01 for all; Table 2). Caregivers of children ages 2 months-4 years also reported a similar association between VOC frequency and the ITQOL-SF47 parental time domain (p<0.01; Table 2). ITQOL-SF47 parental emotional impact scores also differed when compared to a significance level of 0.05, but were not statistically different after adjusting for multiple comparisons.Conclusions: Via both self- and caregiver-reports, these surveys demonstrated significant detrimental impact of VOCs on pediatric patients with SCD. Decrements were observed across various domains of HRQoL, including general health, physical functioning, pain, sleep, role/social limitations, and mental health. VOC frequency negatively impacted family activities and caregiver time and emotions, confirming anecdotal evidence that the effects of VOCs extend beyond the child to the caregiver. Given the cross-sectional study design, these analyses did not establish a temporal or causal relationship between VOCs and HRQoL; however, it is plausible that treatments aimed at reducing the frequency of VOCs may alleviate some of the burden experienced by pediatric patients with SCD and their families. [Display omitted] DisclosuresCampbell: Novartis Pharmaceuticals Corporation: Consultancy, Research Funding. Rizio: Novartis Pharmaceuticals Corporation: Other: Avery Rizio is employed by QualityMetric Incorporated, LLC, which received funding from Novartis to conduct this research. McCausland: Novartis Pharmaceuticals Corporation: Other: Kristen McCausland is an employee of QualityMetric Incorporated, LLC, which received funding from Novartis to conduct this research. Iorga: Novartis Pharmaceuticals Corporation: Current Employment, Current equity holder in publicly-traded company. Yen: Novartis Pharmaceuticals: Current Employment; Merck & Co., Inc.: Current holder of stock options in a privately-held company, Ended employment in the past 24 months. Paulose: Novartis Pharmaceuticals Corporation: Current Employment. Lee: Novartis Pharmaceuticals Corporation: Current Employment.

Health-related quality of life among transgender and gender expansive youth at a rural gender wellness clinic.

To address a critical gap in the existing Health-Related Quality of Life (HRQOL) literature by quantifying and describing HRQOL among transgender and gender expansive (TG/GE) youth at a rural gender clinic and comparing the HRQOL of these youth to age-stratified United States (U.S.) population standards. This cross-sectional study includes results of the baseline HRQOL assessment of 141 TG/GE patients enrolled in the Gender Wellness Center (GWC) Pediatric Patient Registry. HRQOL was assessed using the Child Health Questionnaire-Child Form 87 (CHQ-CF87; ages < 18) and the Short Form-36 (SF-36v2; ages 18-21). Mean subscale scores were compared to the most current U.S. population standards available. On all but one of the CHQ-CF87 subscales, TG/GE youth scored significantly lower than 2015-2016 U.S. general population youth and youth with two chronic conditions. On the SF-36v2, TG/GE youth scored significantly higher than 2009 U.S. standards on all physical health domains but lower on all but one of the mental health domains. Cross-sectional HRQOL data from a registry of TG/GE youth indicate significantly poorer mental health measures as compared with the U.S. general population. Longitudinal assessments are needed to evaluate whether HRQOL improves with gender-affirming care. Future studies should aim to identify sociocultural factors at the intersection of rurality and health that contribute to diminished HRQOL among rural TG/GE youth.

Longitudinal functional health status in young adults with repaired dextro-transposition of the great arteries: A Congenital Heart Surgeons' Society study

ObjectivesImproved survival has led to interest in functional health status (FHS) as patients with dextro-transposition of the great arteries (d-TGA) transition to adulthood. Our primary objectives were (1) evaluation of The Medical Outcomes Study Short Form-36 Health Survey (SF-36) results; (2) comparison with results of patients who completed the Child Health Questionnaire-Child Form 87 (CHQ-CF87) previously, or the PedsQL Generic Core Scales (PedsQL) survey subsequently; and (3) determination of factors associated with SF-36 domains. MethodsSurvivors from the d-TGA Congenital Heart Surgeons' Society cohort (1985-1989) completed the SF-36 (2010) as a measure of FHS (n = 210; age 21-26 years). Patient characteristics, medical history, psychosocial factors, and previous adolescent CHQ-CF87 FHS assessment (2000) were explored for association with SF-36 domains, along with comparison with recent PedsQL data (2017). ResultsPatients scored themselves the same/higher than published normative data in 10 of 10 SF-36 summary scores/domains and similar in 5 of 6 PedsQL summary scores/domains. Factors commonly associated with lower summary scores/domains of the SF-36 were presence of cardiac symptoms, heart condition impacting physical activity/overall health/quality of life, unemployment, and lack of postsecondary education. Less commonly associated factors were lower birth weight, greater total medication number, female sex, shorter procedure-free interval, poor health knowledge, lower family income, younger age at SF-36, living with parents, and being married. These factors accounted for 17% to 47% of the variation in FHS summary scores/domains. FHS was minimally related to d-TGA morphology and repair type. ConclusionsPatients with d-TGA surviving into adulthood, regardless of morphology or repair type, can primarily expect normal FHS. Addressing the challenges of patients with d-TGA entering adulthood requires consideration of psychosocial factors and clinical management.

Health-related quality of life may deteriorate from adolescence to young adulthood after extremely preterm birth.

This study examined the development of health-related quality of life (HRQoL) and health from adolescence to adulthood after extremely preterm birth. We assessed a population-based cohort of extremely preterm-born (EPB) infants (gestational age of ≤28weeks or birthweight of ≤1000grams) and term-born (TB) controls at 17 and 24years of age. They completed the Child Health Questionnaire-Child Form 87 at 17years of age, the Short Form Health Survey-36 (SF-36) at 24years of age and the Health Behaviour in School-aged Children-Symptom Checklist at both ages. Of the 51 eligible EPB subjects, 46 (90%) were included and nine had severe neurosensory disabilities. On the whole, EPB and TB subjects gave their HRQoL and health similar ratings, but EPB subjects with disabilities reported poorer physical functioning at 17 and EPB subjects without disabilities reported lower scores on three of the eight SF-36 scales for social functioning and mental health and reported more psychological health complaints at 24. Differences remained in adjusted analyses. Changes from 17 to 24years of age were minor in EPB subjects with disabilities. Our comparison of EPB and TB subjects at the ages of 17 and 24 indicated that psychosocial HRQoL may deteriorate for EPB subjects when they enter adulthood.

Predictors of Health-Related Quality of Life in Adolescents with Tetralogy of Fallot

To assess health-related quality of life (HRQoL) of adolescents with repaired tetralogy of Fallot (TOF) and whether impairments in HRQoL domains are associated with neurocognitive and medical factors. Parents of subjects with TOF and healthy referents 13-16 years of age completed the Child Health Questionnaire-Parent Form 50, generating psychosocial (PsS) and physical (PhS) health summary scores. Adolescents completed the Child Health Questionnaire-Child Form 87 and concurrent in-person neurocognitive testing. We analyzed relationships of PsS and PhS scores with neurocognitive performance and medical factors. Compared with referents (n = 85), adolescents with TOF without a genetic diagnosis (n = 66) had lower PsS (50.9 ± 9.4 vs 57.2 ± 4.2, P < .001) and PhS scores (49.4 ± 9.5 vs 55.8 ± 4.9; P < .001). Compared with a normative sample, these adolescents with TOF had similar PsS scores (P = .52) but significantly lower PhS scores (P = .01). Within adolescents with TOF without genetic disorders, lower PsS scores were highly associated with worse neurocognitive measures, particularly the parent-reported Behavior Rating Inventory of Executive Function composite (r = -0.66, P < .001) and Parent Conners' attention deficit-hyperactivity disorder Index T score (r = -0.54, P < .001), whereas associations of PhS scores with neurocognitive measures were weaker. Psychosocial health status in adolescents with TOF without genetic disorders was worse than in healthy referents without risk factors for brain injury but similar to a normative sample; physical health status was worse in these adolescents than in either comparison group. Within these subjects with TOF, worse psychosocial health status was most highly associated with concurrent executive dysfunction and attention deficit-hyperactivity disorder. Optimizing HRQoL constitutes another indication for attention to neurodevelopment in children with congenital heart disease.

O-127 How Good Is Life After Heart Transplantation, Children’s Perception

Background and aims In children with end-stage heart disease heart transplantation (HTx) offers a good therapeutic option with favourable outcomes. Patients are expected to improve in general health, but unfortunately little is known about the health-related quality of life (HRQoL) after HTx, which is also influenced by factors such as the psychosocial adaptation of children and parents. We aimed to better understand children’s HRQoL after HTx with the aim to give them adequate support. Methods Between 2000 and January 2014 28 children underwent successful heart transplantation at our institution. All patients older than 8 years (n = 21) were asked to complete a validated and reliable questionnaire, the Child Health Questionnaire-Child Form 87 (CHQ-CF87) questionnaire themselves. Results 76% of the patients participated; median age was 15.2 years (range: 13.6–19.6), median time after HTx was 31 months (range 7–134). All children attended school. Even though they scored comparable to normative data on most of the subscales, their general health perception (GHP) (50.0 vs. 74.6, p Conclusion In children after HTx, overall HRQoL, especially on the psychosocial scales, seems to be good. Only the subscales general health perception and physical functioning were significant lower. This might be explained by their chronic need for treatment, follow-up and concomitant diseases frequently seen in HTx patients. Nevertheless, in order to learn dealing with their situation all children should be supported by a specialised multidisciplinary team, including psychologists and child life specialists.

Health-related quality of life in children with specific learning disability: children's self-reports versus parents' proxy reports

Dear Editor, I read with great interest the timely review article by Eiser and Varni and agree that it is necessary to evaluate both children's self-reports and parents' proxy reports to determine the healthrelated quality of life (HRQOL) of children [1]. However, it may not be possible to follow their dictum that both child and parent HRQOL instruments should necessarily measure the same constructs with parallel items in order to make comparisons between self and proxy reports more meaningful [1]. To explain this, I would like to share my team's experience while documenting the HRQOL of children with newly diagnosed specific learning disability (SpLD). In the years 2005–2006, we documented the HRQOL of these children using the Child Health Questionnaire-Parent Form 50 [5]. These parents' proxy reports revealed that their HRQOL was significantly compromised in several psychosocial (role/social limitations as a result of emotional–behavioural problems, general behaviour, and mental health) and physical (physical functioning, role/social limitations as a result of physical health and general health perceptions) domains of health; and in both summary scores with psychosocial > physical [4]. However, we were unable to simultaneously document these children's self-reports as the equivalent child version, namely, the Child Health QuestionnaireChild Form 87 was designed to be completed without interviewer assistance [5], and was too difficult for them to complete, due to their limited reading ability. Subsequently, in the year 2008, with a different study sample, we were able to document the self-reported HRQOL of children with newly diagnosed SpLD by using the selfreport long version of the DISABKIDS chronic generic module instrument, namely the DCGM-37-S [2, 6]. This was possible as the developers of the DCGM-37-S permit the interviewer to offer assistance to read out the question and explain before a child marks his/her response [6]. Their selfreported HRQOL revealed that they perceive their psychosocial, physical, and overall HRQOL to be significantly compromised (social exclusion > emotion > limitation > treatment > independence > social inclusion) [2]. Although we utilised instruments with different constructs, these data helped identify specific domains which guided us to develop counselling strategies to help improve their HRQOL [2, 4]. Lastly, I would like to add to the review by Eiser and Varni [1] by mentioning that evaluating both children's self-reports and parents' proxy reports can reveal contradictory but useful perceptions of the impact of comorbidity. Contrary to parent proxy reports [4], children with newly diagnosed SpLD having comorbid “untreated” attention-deficit/hyperactivity disorder (ADHD) did not perceive their comorbidity to further adversely affect their HRQOL [3]. This information was utilised by us to allay the anxieties of parents who otherwise get overwhelmed coping up when their child has such a dual diagnosis, namely, SpLD + ADHD [3].

Health Related Quality of Life in Adolescents with Bladder Exstrophy-Epispadias as Measured by the Child Health Questionnaire-Child Form 87

We determined health related quality of life as reported by adolescents with bladder exstrophy or epispadias using a validated generic instrument. Adolescents age 11 to 18 years with bladder exstrophy or epispadias (57) completed a validated, generic, health related quality of life instrument, the CHQ-CF87 (Child Health Questionnaire-Child Form 87). Urinary incontinence, catheterization status, and medical and surgical history data were also obtained. Mean summary scores and 95% CIs for each subdomain of the CHQ-CF87 were calculated, and descriptively compared to 2 population based samples. In our sample health related quality of life outcomes by continence status were compared using univariate and multivariate analysis. However, this analysis was limited by a small sample size. Mean age of the 49 patients with bladder exstrophy and the 8 with epispadias was 14.3 years, 67% were male and 81% were Caucasian. There were 31 participants who reported incontinence and the median number of lifetime surgeries was 9. The exstrophy population scored well in all subdomains of the instrument when descriptively compared to 2 large samples of adolescent populations. In our sample incontinent patients had lower scores by multivariate analysis in 7 of 10 domains and better scores in 3 of 10 domains, although these differences were not statistically significant. Adolescents with bladder exstrophy and epispadias reported relatively good scores on the CHQ-CF87 when descriptively compared to other reference populations. This finding suggests that these children adapt well to the challenges of their condition. Analysis of the association of incontinence with health related quality of life was limited by the small sample size.

Severe Fatigue and Reduced Quality of Life in Children With Hereditary Motor and Sensory Neuropathy 1A

Severe fatigue and low quality of life are reported by a majority of adult patients with hereditary motor and sensory neuropathy 1A. In children with hereditary motor and sensory neuropathy 1A, the prevalence and impact of fatigue have not been studied yet. In this questionnaire survey, 55 Dutch children (response rate 77%) with genetically confirmed hereditary motor and sensory neuropathy 1A participated (mean age 15 years [standard deviation 2.1]). Prevalence of severe fatigue (based on a cut-off score of the Checklist Individual Strength) was 24%, in contrast to 14% in a Dutch school-based population (P < .05). Almost all quality-of-life scores (measured with the Child Health Questionnaire-Child Form 87) were significantly worse than population norms (P < .05). Fatigue severity was associated significantly (P < .01) with all quality-of-life scores (-0.4 < r < -0.7). In conclusion, severe fatigue and diminished quality of life are more frequent among children with hereditary motor and sensory neuropathy 1A compared to healthy peers. The strong association between fatigue severity and quality of life suggests a negative impact of fatigue on quality of life in these children.

Low birth weight young adults: quality of life, academic achievements and social functioning

To compare the quality of life (QOL), academic achievements and social functioning of 134 non-handicapped low birth weight (LBW, birth weight < 2000 g) and 135 normal birth weight (NBW, birth weight > 3000 g) young adults. Population-based longitudinal follow-up study. The Norwegian version of the originally US child health questionnaire, child form 87 (CHQ-CF87), a generic health instrument was applied to measure different physical and psychosocial concepts of QOL. Questionnaires and semi-structured interviews were applied to the cohort to register different aspects of social functioning and academic performance. The LBW group reported well-being in the different aspects of QOL. The LBW group was socially well functioning. The college attendance was similar in the two groups, but more LBW young adults had dropped out of school or attended individually adjusted classes. Performance in mathematics for the LBW women attending academic college was lower. With this exception, the academic performance was comparable in the two groups. Except a somewhat higher rate of school dropouts, the overall outcome of school performance, QOL and social functioning in the LBW young adults was comparable to that of the NBW control group.

Health-related quality of life in children and adolescents with syndromic craniosynostosis

Syndromic craniosynostosis is a congenital disorder characterised by premature fusion of calvarial sutures combined with other anomalies. The facial appearance is different and patients may show physical impairment, mental or developmental disabilities, elevated intracranial pressure and obstructive sleep apnoea. The impact of this condition on daily functioning has not been studied before. The aim of this study is to assess the health-related quality of life in children and adolescents with syndromic or complex craniosynostosis and to determine the impact of these syndromes on parents. A prospective study was performed in 111 children. Health-related quality of life was measured by international standardised quality-of-life questionnaires, the Infant Toddler Quality of Life Questionnaire (ITQoL), Child Health Questionnaire Parental Form 50 (CHQ-PF50), Child Health Questionnaire Child Form 87 (CHQ-CF87) and Short-Form Health Survey (SF-36). For comparison, we used Dutch population norms of health-related quality-of-life-scores. Parents' scores for patients with syndromic or complex craniosynostosis were significantly lower than those for the norm population. Apert syndrome had the largest impact on the different domains. Scores on the CHQ-PF50 scales for 'physical functioning', 'parental impact emotional' and 'family activities' for these patients were significantly lower than scores for patients with other syndromes, possibly due to the complexity of the syndrome, which includes complex syndactyly, cognitive impairment and behaviour problems. Parents reported a reduced health-related quality of life for themselves, mostly psychosocial with clearly significantly lower general health perceptions. In conclusion, syndromic craniosynostosis has a large impact on the health-related quality of life of these children and their parents, both physical and psychosocial.

Follow-up results on monitoring and discussing health-related quality of life in adolescent diabetes care: benefits do not sustain in routine practice

We previously demonstrated that adding monitoring and discussion of health-related quality of life (HRQoL) of adolescents with type 1 diabetes to routine periodic consultations positively impacts psychosocial well-being and satisfaction with care. The current study examines whether these positive effects are maintained 1 year after the intervention was terminated and patients received regular care again, with no formal HRQoL assessment. Forty-one adolescents with type 1 diabetes were followed for 1 year after the initial HRQoL intervention, in which their HRQoL had been assessed and discussed as part of period consultations using the PedsQL. Changes in physical and psychosocial well-being [Child Health Questionnaire-Child Form 87 (CHQ-CF87), diabetes family conflict scale (DFCS), Center for Epidemiological Studies scale for Depression (CES-D)], satisfaction with care [Patients' Evaluation of the Quality of Diabetes (PEQ-D) care], and glycemic control (HbA(1c)) were determined 12 months after the HRQoL intervention had ended. One year after the HRQoL intervention, mean scores on CHQ subscales: behavior (p = 0.001), mental health (p = 0.004), and self-esteem (p < 0.001) had decreased, whereas the family activities subscale remained stable. Adolescents were less satisfied with their care (p = 0.012), and HbA(1c) values had increased significantly 12 months postintervention (p = 0.002). The beneficial effects of an office-based HRQoL intervention in adolescents with diabetes largely disappear 1 year after withdrawing the HRQoL assessment procedure. This finding underscores the importance of integrating standardized evaluation and discussion of HRQoL in routine care for adolescents with diabetes.

The Relationship of Physical Activity to Health Status and Quality of Life in Cerebral Palsy

To compare the influence of functional level, ambulatory, and physical activity performance on self-reported health status and quality of life (QOL) of youth with cerebral palsy (CP) and with typical development. A cross-sectional comparison cohort design was used in 81 youth with CP, ages 10 to 13 years and 30 youth with typical development. Participants wore the StepWatch monitor for 7 days and completed the Activity Scale for Kids, Child Health Questionnaire-Child Form, and Youth Quality of Life Questionnaire. Multiple regression analysis was used. Self-reported activity performance influenced self-reported physical (beta = 0.36), behavioral (beta = 0.32), and emotional (beta = 0.29) health. Functional level and performance did not influence QOL. Measures of ambulatory and physical activity and youth-reported health status separated from the measure of QOL seem helpful in defining the specific health issues of ambulatory youth with CP and have implications for physical activity intervention.

Health-Related Quality of Life in Adolescents with Wheezing Attacks

Purpose The purpose of this study was to evaluate health-related quality of life in adolescents with wheezing attacks using self-reported data, and to determine independent associations between wheezing attacks and quality of life using multivariate linear regression models. Methods Our study sample included 933 of 1071 eligible adolescents who participated in a study in two Municipal Health Services in the Netherlands. Wheezing was defined based on selected questions from the International Study of Asthma and Allergies in Childhood. Quality of life was measured using the Child Health Questionnaire–Child Form (CHQ-CF). Higher scores indicated better quality of life. Results According to the adolescents, 72 (7.7%) and 24 (2.6%) had less than four and, at least four wheezing attacks during the past year, respectively. Compared with adolescents who never wheezed, adolescents with wheezing attacks had significantly lower quality of life scores for nine out of 10 CHQ-CF scales. Except for the Role Physical and Family Activities scales, relevant differences in quality of life were observed for all scales among adolescents who reported at least four wheezing attacks during the past year; most affected were the Bodily Pain, General Health, Self Esteem, and Mental Health scales. In multivariate linear regression models, wheezing attacks remained significantly associated with quality of life for nine out of 10 CHQ-CF scales. Conclusions Wheezing attacks are independently associated with several dimensions of health-related quality of life in adolescents. Specifically, the presence of at least four wheezing attacks during the past year was associated with relevant deficits in quality of life.

Feasibility, reliability, and validity of adolescent health status measurement by the Child Health Questionnaire Child Form (CHQ-CF): internet administration compared with the standard paper version

AimsIn this study we evaluated indicators of the feasibility, reliability, and validity of the Child Health Questionnaire-Child Form (CHQ-CF). We compared the results in a subgroup of adolescents who completed the standard paper version of the CHQ-CF with the results in another subgroup of adolescents who completed an internet version, i.e., an online, web-based CHQ-CF questionnaire.MethodsUnder supervision at school, 1,071 adolescents were randomized to complete the CHQ-CF and items on chronic conditions by a paper questionnaire or by an internet administered questionnaire.ResultsThe participation rate was 87%; age range 13–7 years. The internet administration resulted in fewer missing answers. All but one multi-item scale showed internal consistency reliability (Cronbach’s α > 0.70). All scales clearly discriminated between adolescents with no, a few, or many self-reported chronic conditions. The paper administration resulted in statistically significant, higher scores on 4 of 10 CHQ-CF scales compared with the internet administration (P < 0.05), but Cohen’s effect sizes d were ≤0.21. Mode of administration interacted significantly with age (P < 0.05) on four CHQ-CF scales, but Cohen’s effect sizes for these differences were also ≤0.21.ConclusionThis study supports the feasibility, internal consistency reliability of the scales, and construct validity of the CHQ-CF administered by either a paper questionnaire or online questionnaire. Given Cohen’s suggested guidelines for the interpretation of effect sizes, i.e., 0.20–.50 indicates a small effect, differences in CHQ-CF scale scores between paper and internet administration can be considered as negligible or small.

Health-related quality of life in child patients with temporomandibular disorder pain

Temporomandibular disorders (TMDs) occurs frequently in children and measuring health-related quality of life (HRQL) can complement efficacy measures, offering a complete picture of the impact of disease and treatment on overall well-being. Aim To compare HRQL, pain threshold (PT) and range of motion (ROM) in child patients with temporomandibular disorder (TMD) pain and an age and gender matched control group. Methods The study design was a controlled cross-sectional study. Forty-two children participated in the study. Twenty-one child patients referred to a dental pediatric clinic for specialist treatment because of TMD pain and an age and gender matched control group completed the Child health questionnaire-child form 87 (CHQ-CF87). PT was measured with Pain matcher ® and ROM in terms of maximum unassisted mandibular opening was measured with a ruler. Results The child patients with pain more than once a week had a pain duration ranging from 3 months to almost 6 years. The median for pain intensity measured with visual analogue scale (VAS) was 47 ranging from 5 to 80 and the median for behavioral rating scale (BRS) was 3 ranging from 1 to 4. Child patients with TMD pain more than once a week reported significantly lower scores in CHQ-CF87 when compared with a control group. The results for PT and ROM were non-significant. Conclusion CHQ-CF87 could be used for measuring health and to evaluate the efficacy of treatment in child patients with TMD pain.

Improved perceived health status persists three months after a special sports camp for children with congenital heart disease

Although summer and sports camps for children with congenital heart disease are organized in many countries and regions, empirical data on the effects of such camps is limited. The aim of the present study was to investigate changes in the perceived health status and habitual physical activities in children attending a special sports camp. In this longitudinal study, 25 children with congenital heart disease who participated in a three-day multi-sports camp were included. The perceived health status was measured using the Child Health Questionnaire-Child Form, CHQ-CF87, completed by the child at the start of the camp (T1), at the end of the camp (T2), and 3 months after the camp concluded (T3). Habitual physical activities were assessed by means of a modified version of the Baecke questionnaire, which was completed by one of the parents at T1 and T3. During the sports camp, we observed significant improvements in the children's perception of their physical functioning, role-physical functioning, general health, role-emotional functioning, self-esteem, mental health, and general behavior. For physical functioning, role-emotional functioning, and family activities, high scores persisted three months after the sports camp concluded. The habitual physical activities (sport and leisure time) of the children remained unchanged. In conclusion, we propose that a special sports camp for children with congenital heart disease may improve specific dimensions of subjective health status. Our study confirms a previous report on the benefits of such camps for afflicted children. If these findings can be further corroborated in other settings, participation in sport camps should be advocated as a simple, noninvasive means to promote healthier children.

Coping Styles and Health-Related Quality of Life in Children with Sickle Cell Disease.

Children with sickle cell disease use different coping styles to control their pain. Those who use an affective coping style such as fear and anger self-statements or a passive coping style such as resting have more severe pain, higher utilization of health care services, and worse psychological adjustment. Those who use active coping styles such as diverting attention or praying and hoping engage in greater work and social activities. The association of coping style to the health-related quality of life (HRQL) in children with sickle cell disease is not known. Our study sought to determine the association of coping styles with HRQL in children with sickle cell disease. We hypothesized that children with sickle cell disease who used affective or passive coping styles would have worse HRQL.To determine the association between coping styles and HRQL, the Child Health Questionnaire-Child Form (CHQ-CF87) was completed by children with SCD age 10–18 years at the time of their annual comprehensive visit to 1 of 2 sickle cell disease clinics. Mean scores were calculated for each of the 12 concepts that make-up the CHQ-CF87. Scores range from 0, representing poor quality of life, to 100, representing a high quality of life. In addition, children also completed the Coping Strategies Questionnaire (CSQ) for sickle cell disease. This questionnaire assesses ways in which children cope with pain based on the child's response on a 7-point Likert-type scale where 0 =never and 6=always. Mean scores were calculated for each of 3 types of coping styles: affective, passive adherence and active coping. Pearson correlation coefficients were calculated to determine the association of HRQL with coping style. Partial correlation coefficients, controlling for disease severity, were calculated for those relationships with significant associations.Forty-eight children completed both questionnaires for analysis. The mean age of the children was 13. 3 years (standard deviation 2.2) and 58% were female. Children who used an affective coping style had worse associated HRQL scores in the areas of mental health and self esteem (r of −0.38, p=0.010 and r of −0.35, p=0.015 respectively). Furthermore, children who used an affective coping style or passive coping style reported a greater frequency of disruption in their usual family activities or that their health more likely was a source of family tension (r of −0.39, p=0.006 and r of −0.31, p=0.037 respectively). These relationships persisted after controlling for disease severity. There was no significant association with other domains of HRQL and coping.In conclusion, children with sickle cell disease who report using affective and passive coping styles have worse mental health and self esteem and increased disruption of family activities. This maladaptive response to pain further impacts the well being of children with sickle cell disease and their families. In addition, these findings support the need to provide psychological intervention and therapy to improve children's coping abilities to ultimately improve their HRQL.

CONTEMPORARY EPIDEMIOLOGY OF BLADDER EXSTROPHY IN THE UNITED STATES

Although bladder exstrophy is much discussed in the urology literature, there are few population based epidemiological data available for this rare condition. The purpose of this study was to use a large nationwide database to collect contemporary data on the incidence and demographics of bladder exstrophy. The Healthcare Cost and Utilization Project Nationwide Inpatient Sample is a 20% sample of nonfederal United States hospitals containing data on 5 million to 7 million inpatient stays per year. The sample was limited to newborns, and International Classification of Disease-9 codes were used to identify cases of bladder exstrophy. We then determined nationally weighted incidence through time, and performed multivariate analyses to identify factors associated with exstrophy. We identified 205 patients with exstrophy among 9,452,110 newborns. The overall weighted incidence of exstrophy was 2.15 per 100,000 live births. The male-to-female ratio was almost even (OR 0.989, 95% CI 0.88 to 1.12). White infants were significantly more likely to present with exstrophy than nonwhites (incidence 2.63 vs 1.54 per 100,000, p <0.0001). Exstrophy incidence also varied by geographic region, socioeconomic status (SES) and insurance status. On multivariate analysis the racial variation in exstrophy incidence persisted even after adjustment for geographic region, SES and insurance status. Conditions such as spina bifida, cleft palate, preterm birth and gastrointestinal anomalies were more common in newborns with exstrophy. Bladder exstrophy is rare, occurs in equal numbers of live male and female newborns, and is associated with certain co-morbid conditions. Incidence appears to be stable through time. Nonwhite race, uninsured status, high or low SES and Western geographic region are associated with lower exstrophy incidence.

Reliability and validity of the child health questionnaire-child form (CHQ-CF87) in a Dutch adolescent population.

Feasibility, reliability, and discriminative validity of the cross-culturally adapted Dutch version of the originally US child health questionnaire-child form (CHQ-CF87), an 87-item generic pediatric health-related quality of life instrument, were assessed. The success criterion in this first evaluation was the equivalence of psychometric properties of the adapted and the original CHQ. A total of 466 schoolchildren (9-17 years) were invited to complete the questionnaire in the classroom. Test-retest reliability was measured after 14 days in a subgroup (n = 71). Response was 96%. Four scales had ceiling effects (>50%), as was reported in an Australian study. Cronbach alpha-values were adequate (>0.70), except for 'physical functioning' (0.56). Test-retest correlations, not previously reported, were not statistically significant for two CHQ-scales, whereas average retest scores indicated better health for five scales (p < 0.01). The CHQ scales discriminated significantly (p < 0.01) between children without (n = 281) and children with two or more self-reported chronic diseases (n = 59). This is in correspondence with US and Australian reports. The current data support application of the Dutch CHQ-CF in predominantly healthy populations, e.g. in school settings. Given the limitations of this study and some less favorable results (score distributions, internal consistency, test-retest reliability), further evaluation of the CHQ-CF is recommended, preferably by analyses of item performance and scale validity in international data sets that include varied clinical subgroups.