Sex differences in children's health status as measured by the Pediatric Quality of Life Inventory (PedsQL)™: cross-sectional findings from a large school-based sample in the Netherlands

Background Previous research has shown that female adolescents and adults report lower health status than their male peers. Possibly, this discrepancy already develops during childhood. We collected sex-specific data with the Pediatric Quality of Life Inventory (PedsQL) in a large school-based sample. Methods The online version of the PedsQL was administered to healthy Dutch children aged 5–7 years (parent proxy-report), 8–12 years (parent proxy-report and child self-report), and 13–17 years (parent proxy-report and child self-report), recruited through regular primary and secondary schools. Sex differences were assessed using t-tests or Mann–Whitney U-tests. Wilcoxon signed-rank tests and intraclass correlation coefficients served to compare parent proxy-reports with child self-reports. Multivariable linear regression analyses were used to assess the associations of sex of the child, age, and parental educational level with PedsQL scores. Results Eight hundred eighty-two parents and five hundred eighty one children were recruited from 15 different schools in the Netherlands. Parents of 8-to-12-year-olds reported higher scores on School Functioning for girls than for boys (mean difference [MD]: 6.56, p < 0.001). Parents of 13-to-17-year-olds reported lower scores on Physical and Emotional Functioning for girls than for boys (MDs: 2.14 and 5.79, p = 0.014 and p < 0.001, respectively). Girls aged 8–12 years reported lower scores than boys in this age group on Physical Functioning (MD: 3.09, p = 0.005). Girls aged 13–17 years reported lower scores than boys in this age group on Physical Functioning (MD: 3.67, p < 0.001), Emotional Functioning (MD: 8.11, p < 0.001), and the Total Score (MD 3.26, p = 0.004). No sex differences were found in children aged 5–7 years. Agreement between child self-reports and parent proxy-reports was poor to moderate. Conclusions Girls generally had lower PedsQL scores than boys, both in parent proxy-reports and in child self-reports. We recommend to apply sex-specific data when assessing health status using the PedsQL.

Assessing whether child and parent reports of the KINDL questionnaire measure the same constructs of quality of life in children with attention-deficit hyperactivity disorder

Background Discrepancy between child self-report and parent proxy-report has long been documented in the health-related quality of life (HRQoL) measurement of children with chronic health conditions. This study aims to assess whether child and parent reports of the Kinder Lebensqualität fragebogen (KINDL) questionnaire measure the same construct of HRQoL in children with attention-deficit hyperactivity disorders (ADHD). Methods Participants were 122 Iranian children with ADHD and 127 of their parents, who completed the child and parent reports of the KINDL, respectively. Internal consistency of the child and parent reports were assessed by Cronbach's alpha. The intra-class correlation (ICC) coefficient and factor analysis were applied to assess whether the child self-report and the parent proxy-report measured the same construct of HRQoL. Additionally, convergent and discriminant validity were assessed using the Spearman correlation. Results The results of factor analysis revealed that the child self-report and parent proxy-report measure two different aspects of HRQoL. Moreover, both versions of the KINDL instrument showed excellent convergent and discriminant validity. The internal consistency was close to or greater than 0.7 for all domains of both child and parent reports. Conclusions Although the child self-report and the parent proxy-report of the Persian version of the KINDL have good psychometric properties, they are not interchangeable. This finding indicates that Iranian children with ADHD and their parents evaluate children's HRQoL from their own viewpoints.

Assessment of Health-related Quality of Life in Saudi Children with Cancer

Advances in pediatric cancer treatment and dramatic improvement in long-term survival have made health-related quality of life (HRQOL) a priority. This study describes the HRQOL of Saudi children on cancer treatment, given the paucity of data on the subject. Parents of children undergoing cancer treatment between the ages of 2 and 12 years enrolled to answer the Arabic version of the parent proxy report PedsQL™ 3.0 cancer module. The module items were reverse-scored to a linear scale from 0 to 100, in which higher scores indicated a better HRQOL. Of the 95 study participants, 61 (64.2%) were hematological malignancies and 34 (35.8%) solid malignancies. The mean score of our sample’s total HRQOL was 72.3, which is in line with the results of similar studies worldwide. The lowest scores were observed for procedural anxiety (60.14), perceived physical appearance (67.37), and treatment anxiety (67.58), while the highest were for communication (80.21), nausea (78.32), and cognitive problems (78.32). Significant associations were reported between the patients aged younger than 5 years and procedural anxiety, those aged 5 years or older and perceived physical appearance, and frequent hospital visits and worry. Healthcare professionals should consider the poor HRQOL sub-scales and their associated risks to improve treatment outcomes.

Measuring parent proxy-reported quality of life of 11 rare diseases in children in Zhejiang, China

Background It has become increasingly important to measure the health-related quality of life (HRQoL) of rare diseases in children and adolescents in recent decades. Much attention has been paid to investigate the HROoL of a specific rare disease by self-report in previous studies. This study aimed to evaluate and compare the HROoL of 11 rare diseases in Chinese children by parent proxy-report, to explore the factors associated with HROoL of patients, and to understand the problems of most concern. Methods A total of 651 children aged from 2 to 18 were enrolled from the Children’s Hospital Affiliated Zhejiang University in 2018. Their parents completed the parent proxy-report version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™ 4.0). Independent samples t-test, one-way ANOVA, or Kruskal–Wallis H test was used to compare HROoL scores between groups. Multilevel linear regression models with random intercept were applied to analyze the relationship between socioeconomic variables and both the total score and subdomain scores. Results The total PedsQL scores of Patent ductus arteriosus (PDA), Infantile agranulocytosis, Autoimmune thrombocytopenia (ITP), Polysyndactyly, Hirschsprung disease, Cleft lip and palate, Tetralogy of fallot, Myasthenia gravis, Guillain–barre syndrome, Glycogen storage disease, and Langerhans cell histiocytosis children were 79.65 ± 5.46, 95.88 ± 3.48, 71.39 ± 3.27, 91.77 ± 6.35, 76.18 ± 6.92, 96.33 ± 4.22, 77.85 ± 8.90, 95.99 ± 3.31, 85.77 ± 4.56, 82.97 ± 4.13 and 77.6 ± 5.15, respectively. Age was significantly associated with physical functioning, school functioning, and psychosocial health scores. The household registration place was significantly related to the total score. The most urgent desire of patients was to reduce the overall medical costs. Conclusions This study showed that patients with PDA had the lowest physical functioning score, while patients with ITP scored the lowest in the emotional functioning, social functioning, school functioning, psychosocial health, and total scores. Incentive policies should be further adopted to improve orphan drug availability and reduce the economic burden of rare diseases.

Measuring parent proxy-reported quality of life of 11 rare diseases in children in Zhejiang, China

Background: It has become increasingly important to measure the health-related quality of life (HRQoL) of rare diseases in children and adolescents in recent decades. Much attention has been paid to investigate the HROoL of a specific rare disease by self-report in previous studies. This study aimed to evaluate and compare the HROoL of 11 rare diseases in Chinese children by parent proxy-report, to explore the factors associated with HROoL of patients, and to understand the problems of most concern. Methods: A total of 651 children aged from 2 to 18 were enrolled from the Children’s Hospital Affiliated Zhejiang University in 2018. Their parents completed the parent proxy-report version of the Pediatric Quality of Life InventoryTM 4.0 (PedsQLTM 4.0). Independent samples t-test, one-way ANOVA, or Kruskal-Wallis H test was used to compare HROoL scores between groups. Multilevel linear regression models with random intercept were applied to analyze the relationship between socioeconomic variables and both the total score and subdomain scores.Results: The total PedsQL scores of Patent ductus arteriosus(PDA), Infantile agranulocytosis, Autoimmune thrombocytopenia(ITP), Polysyndactyly, Hirschsprung disease, Cleft lip and palate, Tetralogy of fallot, Myasthenia gravis, Guillain-barre syndrome, Glycogen storage disease(GSD), and Langerhans cell histiocytosis children were 79.65±5.46, 95.88±3.48, 71.39±3.27, 91.77±6.35, 76.18±6.92, 96.33±4.22, 77.85±8.90, 95.99±3.31, 85.77±4.56, 82.97±4.13 and 77.6±5.15, respectively. Age was significantly associated with physical functioning, school functioning, and psychosocial health scores. The household registration place was significantly related to the total score. The most urgent desire of patients was to reduce the overall medical costs.Conclusions: This study showed that patients with Patent ductus arteriosus(PDA) had the lowest physical functioning score, while patients with Autoimmune thrombocytopenia(ITP) scored the lowest in the emotional functioning, social functioning, school functioning, psychosocial health, and total scores. Incentive policies should be further adopted to improve orphan drug availability and reduce the economic burden of rare diseases.

Special Considerations in the Systematic Psychosocial Screening of Youth with Type 1 Diabetes

Objective The American Diabetes Association recommends psychosocial screening for individuals with type 1 diabetes (T1D). The purpose of this study is to present (a) several high priority decisions that program developers may encounter when building a new psychosocial screening program and (b) both the screening development process and results of one mental health screening program within a multidisciplinary pediatric diabetes clinic, with particular emphasis on parent-youth screening agreement and changes to elevation status over time. Methods Youth with T1D ages 12–17 and parents of youth with T1D ages 8–17 were administered mental health screeners as a part of outpatient diabetes visits over a 1-year period. Youth depression and anxiety were screened using self- and parent proxy-report versions of the Patient-Reported Outcomes Measurement Information System (PROMIS). Results Youth (n = 154) and parents (n = 211) completed mental health screening measures, such that 228 youth were screened. Intraclass correlation coefficients (ICCs) between youth- and parent proxy-report agreement were good for the measures of depression (ICC = .787) and anxiety (ICC = .781), with parent proxy-reports significantly higher than youth self-reports of anxiety (p &lt; .01). Of the 93 youth with follow-up screening data and no youth- or parent proxy-reported elevation on the initial screener, 16.1% had at least one elevated screener within 1 year. Conclusions Findings indicate that questions of who to screen and how often to screen may deserve increased scrutiny, as this screening program’s data suggest that there may be benefit to obtaining both youth- and parent report more often than annually.