Health-Related Quality of Life in Children With Sickle Cell Disease Using the Child Health Questionnaire

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

Health-Related Quality of Life in Children Attending a Cardiology Clinic

Our purpose was to evaluate the impact of suspicion or confirmation of heart disease on the physical and psychosocial health of children. We utilized the Child Health Questionnaire (CHQ PF-50). Children ages 5 to 18 years attending a general cardiology clinic were eligible. Those with primary noncardiac diagnoses unrelated to heart disease were excluded. Children with similar conditions were grouped together for analysis. Group and subgroup means were compared to a U.S. population normative sample using the two-sample t test. The CHQ was administered to 321 patients (median age, 10.6 years). Overall, parents reported mean Physical and Psychosocial Summary Scores comparable to those for the normative sample (mean, 51.5 vs 53.0, p = 0.04; mean, 52.3 vs 51.2, p = 0.10). There was a trend toward worse physical health in most subgroups, especially those with cardiomyopathy (CM) (46.5; p = 0.01), and a comparable trend toward better psychosocial health except in those requiring major interventions. In subscale analyses, most subgroups reported worse Physical Functioning than the normative sample, especially CM (85.1 vs 96.1; p = 0.02). Parents of children with CM (53.2 vs 73.0; p = 0.002) and the intervention subgroups (except minor) reported worse General Health Perceptions. Parents experienced increased Parental Impact—Emotional, especially parents of children undergoing evaluations for chest pain (62.5 vs 80.3; p = 0.007). Most parents reported comparable or better health for the Family Cohesion and Bodily Pain subscales. Generally, parents of children attending a cardiology clinic report physical and psychosocial health comparable to that for the general U.S. population. However, diagnosis or confirmation of heart disease resulted in worse physical functioning and health perceptions and a significant negative emotional impact on parents.     

Health-related Quality of Life in Children and Adolescents With Sickle Cell Disease

Objective

To assess health-related quality of life (HRQOL) in children and adolescents with sickle cell disease (SCD).

Design, Setting, and Participants

The PedsQL 4.0 Generic Scales, a multidimensional self-report instrument that has been shown to be valid and reliable for use in children and adolescents with chronic illness, consists of 23 items that assess physical, emotional, social, and school functioning. Questionnaires were administered to 124 children and adolescents (ages 8 to 18 years, child self-report) with SCD (100 sickle cell anemia, 24 sickle β zero thalassemia) and their parents (parent-proxy report). Summary scores for children's and parents' ratings of overall HRQOL and psychosocial health and subscale scores for physical, emotional, social, and school functioning were compared with published data for healthy children. Both summary and subscale scores for children with SCD also were compared with those of their parents.

Results

Children with SCD and their parents rated overall HRQOL and all subdomains of HRQOL lower than did healthy children and their parents (P < .001). Children with SCD rated their own HRQOL significantly better than their parents did for overall HRQOL and all subdomains (P < .001) except emotional functioning (P = .06).

Conclusions

Children with SCD and their parents perceived overall HRQOL and all HRQOL subdomains to be lower than scores reported in healthy children. Therefore, successful therapeutic efforts to improve HRQOL could represent important advances in the health of children with SCD.     

Family Caregivers of Children With Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination

ObjectiveTo examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers’ health-related quality of life (HR-QOL).MethodsFrom July 2018 to July 2019, family caregivers of CMC completed an electronic survey (n = 136) at the time of initial contact with a regional complex care medical home. Information on caregiver HR-QOL and receipt of care coordination services were assessed using the Center for Disease Control's HR-QOL-14 measure and Family Experiences of Care Coordination questionnaire, respectively. Negative binomial regression, adjusted for caregiver and child characteristics, examined associations between caregiver HR-QOL and caregiver experiences of care coordination.ResultsIn the 30 days prior to initial contact, CMC caregivers reported a median of 3.5 mentally unhealthy days, 2 days felt depressed, 7 days felt anxious, and 16 days with insufficient sleep. Caregivers who had a knowledgeable, supportive care coordinator who advocates for their child reported significantly fewer days mentally unhealthy (incidence rate ratio [IRR], 0.46; 95% confidence interval [CI], 0.22–0.95), depressed (IRR, 0.44; 95% CI, 0.21–0.91), or anxious (IRR, 0.5; 95% CI, 0.29–0.85). Having a shared care plan was associated with significantly fewer days mentally unhealthy (IRR, 0.46; 95% CI, 0.23–0.93) or anxious (IRR, 0.53; 95% CI, 0.31–0.92). Having a written visit summary with appropriate content was associated with fewer days of insufficient sleep (IRR, 0.63; 95% CI, 0.43–0.93).ConclusionsCMC family caregivers report experiencing mentally unhealthy days and negative mental symptom days. The experience of specific care coordination activities was associated with higher caregiver mental HR-QOL.     

Health-Related Quality of Life Experienced by Children With Chromosomal Abnormalities and Congenital Heart Defects

Long-term outcomes are fundamental in advising parents about the potential future of their children with congenital heart disease (CHD). No published reports have described the health-related quality of life (HRQL) experienced by children with chromosomal abnormalities who had surgery in early infancy for CHD. A study was undertaken to assess HRQL among children with chromosomal abnormalities and CHD. The authors hypothesized that these children have a worse HRQL than healthy children or a cohort of children matched for CHD diagnosis. Infants with chromosomal abnormalities undergoing cardiac surgery for CHD at 6 weeks of age or younger at the Stollery Children’s Hospital between July 2000 and June 2005 were included in the study. The HRQL of these infants was assessed using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales completed by their parents at a 4-year follow-up evaluation. The study compared the scores for 16 children with normative data. The children with chromosomal abnormalities and CHD had significantly lower mean total PedsQL (71.3 vs. 87.3; p < 0.0001), Psychosocial Summary (70.3 vs. 86.1; p < 0.0001), and Physical Summary (74.3 vs. 89.2; p = 0.0006) scores. Compared with the matched children, those with chromosomal abnormalities had a significantly lower median total PedsQL (75.0 vs. 84.6; p = 0.03), Physical Summary (79.5 vs. 96.9; p = 0.007), and School Functioning (68.5 vs. 83.0; p = 0.03) scores. A better understanding of the mechanisms and determinants of HRQL in these children has the potential to yield important implications for clinical practice including clarity for treatment decision making as well as determination of targeted supports and services to meet the needs of these children and their families differentially.     

Health-Related Quality of Life in Egyptian Children and Adolescents with Hemophilia A

Quality of life (QoL) in hemophilia is an important area in hemophilia outcome assessment. The Haemo-QoL instrument is a set of questionnaires to measure QoL in those children. The objectives of this study was to assess health-related quality of life (HRQoL) in Egyptian hemophilic children and adolescents using an Arabic version of the Haemo-QoL questionnaire. Sixty patients with severe hemophilia A were recruited from 2 hemophilia treating centers in Egypt. Assessment of quality of life was done using the Haemo-QoL questionnaire. The scores of HRQoL were found to be for all dimensions widely above 50. It was highly significant in the 3 dimensions (physical health–family–treatment) in different age groups, but it was impaired in the dimension of “physical health” for 2 groups, and in the dimension of “family” for the oldest group, whereas the youngest group had highly impaired scores concerning the “treatment.” The HRQoL in this study was not affected by the presence of factor VIII (FVIII) inhibitors. The QoL in hemophilic patients in Egypt needs strenuous efforts from hemophilia care–integrated teams of pediatric hematologists and psychiatrists in order to properly assess and improve QoL.     

Racial/Ethnic Disparities in Depression Treatment for Caregivers Investigated by the US Child Welfare System

ObjectiveTo determine whether there are racial/ethnic differences in depression treatment for caregivers investigated by the US child welfare system.MethodsThis cross-sectional study used baseline data from the Second National Survey of Child and Adolescent Well-being, a nationally representative sample of children and caregivers investigated by US child welfare agencies (February 2008–April 2009). We included permanent caregivers who met criteria for major depression and had available covariate data (n = 908). In multivariable logistic regression models, we estimated the associations between caregiver race/ethnicity and past-year receipt of: any depression treatment, minimally adequate depression treatment, and depression treatment from 4 sectors (general medical, psychiatry, nonpsychiatry mental health, and human services). We controlled for clinical need and access variables according to the Institute of Medicine's definition of health care disparities.ResultsBlack caregivers had the lowest rates of treatment receipt of any racial/ethnic group, with 42.2% receiving any depression treatment and 17.2% receiving minimally adequate depression treatment in the past year. In multivariable analyses controlling for clinical need and access variables, Black caregivers were less likely than White caregivers to receive any depression treatment (odds ratio [OR] = 0.49 [95% CI: 0.24–0.97]), minimally adequate depression treatment (OR = 0.37 [95% CI: 0.16–0.85]), and depression treatment from the general medical sector (OR = 0.40 [95% CI: 0.18–0.89]) in the past year (all P< .05).ConclusionsFuture research should examine the underlying mechanisms of Black-White disparities in depression treatment for caregivers involved with the US child welfare system and develop targeted interventions to promote equitable mental health care for this highly vulnerable population.     

Racial and Ethnic Disparities in Emergency Department Wait Times for Children: Analysis of a Nationally Representative Sample

ObjectiveTo evaluate the association of race and ethnicity with wait times for children in US emergency departments (ED).MethodsWe performed a cross-sectional study of ED encounters of children (<18 years) from 2014 to 2019 using a multistage survey of nonfederal US ED encounters. Our primary variable of interest was composite race and ethnicity: non-Hispanic White (NHW), non-Hispanic Black, Hispanic, and all others. Our outcome was ED wait time in minutes. We evaluated the association between race and ethnicity and wait time in Weibull regression models that sequentially added variables of acuity, demographics, hospital factors, and region/urbanicity.ResultsWe included 163,768,956 survey-weighted encounters. In univariable analysis, Hispanic children had a lower hazard ratio (HR) of progressing to evaluation (HR 0.84, 95% confidence interval [CI] 0.76–0.93) relative to NHW children, indicating longer ED wait times. This association persisted in serial multivariable models incorporating acuity, demographics, and hospital factors. This association was not observed when incorporating variables of hospital region and urbanicity (HR 0.91, 95% CI 0.83–1.00). In subgroup analysis, Hispanic ethnicity was associated with longer wait times in pediatric EDs (HR 0.76, 95% CI 0.63–0.92), non-metropolitan EDs (HR 0.75, 95% CI 0.64–0.89), and the Midwest region (HR 0.77, 95% CI 0.69–0.87). No differences in wait times were observed for children of Black race or other races.ConclusionsHispanic children experienced longer ED wait times across serial multivariable models, with significant differences limited to pediatric, metropolitan, and Midwest EDs. These results highlight the presence of disparities in access to prompt emergency care for children.