Parent-reported Quality Of Life Research Articles

Health-related quality of life at age 10 years in children born extremely preterm.

To evaluate the association between prenatal maternal health and socioeconomic status (SES) and health-related quality of life (QoL) among 10-year-old children born extremely preterm. Retrospective analysis of the Extremely Low Gestational Age Newborns (ELGAN) Study cohort of infants born < 28 weeks gestational age. QoL was assessed at 10 years of age using the Pediatric Quality of Life Inventory. Multivariate regression models were used for analyses. Of 1198 participants who survived until 10 years of age, 889 (72.2%) were evaluated. Lower maternal age, lack of college education; receipt of public insurance and Supplemental Nutrition Assistance Program (SNAP) were associated with lower QoL scores. Specific maternal health factors were also associated with lower child QoL scores. Specific, potentially modifiable, maternal health and social factors are associated with lower scores on a measure of parent-reported child QoL across multiple domains for children born extremely preterm.

Out-of-pocket expenses and parent reported quality of life in children with cow's milk protein allergyin Bogotá, Colombia.

To identify the out-of-pocket expenses and parent-reported quality of life (QoL) of children with a diagnosis of cow's milk protein allergy (CMPA)between the ages of 0 and 5 using the Food Allergy Quality of Life Questionnaire - Parent Form. A cross-sectional study was conducted in two tertiary care centers in Bogotá. Demographic, medical information, and QoL scores were collected by parental interview. We carried out a cost-of-illness analysis based on self-reported out-of-pocket expenses attributed to the treatment as a whole and the family's monthly income. Exploratory analyses used the QoL scores and the percentage of out-of-pocket expenses attributable to treatment as outcomes. 122 families were analyzed. Median subject age was 17 months (Q1-Q3: 11-26.75 months) and female subjects made up 71% of the sample. The median QoL score was 3.21 points (Q1-Q3: 2.43-4.34) and only differed by age groups and personal history of other food allergies. The median out-of-pocket treatment related costs was 300,000 Colombian pesos (COP) (Q1-Q3: 280,000-340,000 COP). About 17% of the families had to pay over 15% of their monthly income to purchase food and dietary products. Out-of-pocket treatment related costs differed depending on whether the treatment included formulas (Mann-Whitney test p < 0.001). Out-of-pocket treatment expenses were uncorrelated with the QoL scores. Food allergy related QoL scores were not associated with out-of-pocket expenses as a whole or as a fraction of monthly income but were higher in children with additional food allergies and in older age groups, suggesting a lower QoL.

Social determinants of health rather than race impact health-related quality of life in 10-year-old children born extremely preterm.

Reducing healthcare disparities among children is extremely important given the potential impact of these disparities on long-term health-related quality of life (HRQL). Race and parental socioeconomic status (SES) are associated with child HRQL, but these associations have not been studied in infants born extremely preterm (EP), a population at increased risk for physical, cognitive, and psychosocial impairments. Achieving health equity for infants born EP across their life course requires identifying the impact of racism and SES on HRQL. We aimed to evaluate the association between self-reported maternal race, SES factors, and HRQL among 10-year-old children born EP. Participants were identified from an ongoing multicenter prospective longitudinal study of Extremely Low Gestational Age Newborns (ELGAN Study), born between 2002 and 2004, and evaluated at 10 years of age using the Pediatric quality of life (QoL) Inventory completed by their parent or guardian, assessing physical, emotional, social, school, and total (composite) QoL domains. Multivariable regression models were used to evaluate the relationship between QoL scores and self-identified maternal race, adjusting for SES factors (education level, marital status, and public insurance). Of 1,198 study participants who were alive at 10 years of age, 863 (72.0%) were evaluated at 10 years of age. Differences in mean 10-year QoL scores across racial groups were observed and were significant on univariate analysis. However, these associations attenuated when adjusted for the marital status, public insurance status, and education status of mothers. A comparison of children with English as the primary language spoken at home vs. any other language revealed a significant difference only in school QoL, in which non-English language was associated with more favorable school QoL scores. Among 10-year-old children born EP, differences in parent-reported QoL were associated with maternal SES factors but not with race. Our results suggest that interventions designed to improve the SES of mothers may enhance the QoL of children born EP. Furthermore, these results underscore that race is a social construct, rather than a biological variable, as we work toward greater equity in care provision.

Quality of life of families and siblings of children and adolescents with meningomyelocele.

Children with meningomyelocele may require continuous care. Consequently, there is a risk for caregiver burden and impact on family quality of life (QoL), including siblings' QoL. Some studies analysed caregivers' burden and family QoL separately. However, none of these studies evaluated siblings' QoL and the associations between these three dimensions. This study investigated the associations between caregivers' burden, family QoL and siblings' QoL in Brazilian families of children with meningomyelocele and its correlations with sociodemographic, functional and clinical variables. Siblings' QoL was specifically assessed using as a parameter the QoL of typically developed Brazilian children. One hundred and fifty families, 150 caregivers and 68 siblings completed the Family Quality of Life Scale, Burden Interview, KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires. Most families and caregivers reported a high family QoL and a low caregiver burden. Family QoL was significantly lower as caregivers' burden increased. Caregiver's burden was significantly lower with increasing family QoL levels. Self-reported siblings' QoL was significantly worse than that of typically developed peers. There were no significant differences between self and parent-reported siblings' QoL. Self-reported siblings' QoL was significantly worse as their age increased and better with increasing family QoL levels. Parent-reported siblings' QoL was significantly worse with increasing levels of caregiver's burden and significantly better as family QoL increased. There were no significant associations with functional and clinical variables. Despite the cross-sectional nature of the available data precludes any statements of causality, our results reinforce the relevance of knowing the factors that influence the QoL of families and siblings of children and adolescents with meningomyelocele and the relevance of actions aimed at reducing caregivers' burden, improving family QoL and meeting siblings' individual needs. Future multicenter studies may validate the generalizability of our findings.

Quality of life in Arab children with congenital heart disease.

Management strategies for children with congenital health diseases (CHDs) should encompass more than just the medical aspect of the disease and consider how heart diseases affect their everyday activities and, subsequently, their quality of life (QoL). Global studies witnessed a greater emphasis on studying the QoL associated with CHD. However, there is still a great lag in such data in the Arab region. The purpose of this study was to evaluate QoL in children with CHD using an Arab sample from Jordan. The specific objectives were twofold: (1) to contrast the assessments of children's QoL reported by their parents with those reported by the children themselves, and (2) to assess the factors that influence the QoL of children with CHD. A total of 79 children aged 2-18 with a confirmed diagnosis of CHD were included in the study, along with their mothers. Of them, 38.0% were girls, 67.1% were diagnosed with non-cyanotic CHD, 58.2% had a severe CHD, 92.4% had undergone at least one operation, 81.0% had repaired defects, 13.9% underwent palliated procedures, and 24.1% were admitted to a neonatal intensive care unit after delivery. The Pediatric Quality of Life Inventory was used to assess QoL of children with CHD. Both children's and parents' reports of QoL were analyzed using paired-sample t-tests, ANOVAs, and multiple linear regression. Older children reported significantly lower QoL scores, whereas there were no differences in parents-reported QoL scores across different children age groups. There was a divergence in perceptions of QoL between parents-reported and children-reported scores with parents reporting significantly lower scores. The children-reported QoL in this study seemed to be significantly associated with their gender, age, and the presence of learning difficulties, whereas the parent-reported QoL was only associated with the presence of learning difficulties. Responses from both children and parents need to be considered to understand the similarities and differences between them and to provide further insight into the optimal way to help children with CHD effectively navigate the transition into adulthood. Future research studies of outcomes for survivors of children with CHD are needed to identify high-risk survivors for worse psychosocial functioning and assess prevention measures and treatment interventions to improve their QoL.

Otoplasty in patients with helix valgus: quality of life and satisfaction

BackgroundImportance of helix valgus lies in the psychological and social effect it could have on the patient. Our objective was to assess the impact of otoplasty on the quality of life of children with prominent ears and to establish possible predictors of post-surgical outcomes.Material and methodsA retrospective review of children with prominent ears who underwent otoplasty between 2016 and 2018 was conducted. Demographical information, medical history, characteristics of helix valgus, motivations for surgery, complications, and post-surgical satisfaction were collected. To assess changes in parent-reported quality of life and patient satisfaction following surgery, the validated Glasgow Children’s Benefit Inventory (GCBI) and Patient Outcomes of Surgery-Head/Neck (POS-Head/Neck) surveys were used, respectively.ResultsFifty-three patients responded to the survey (64.6%). From those, 90.6% of parents reported an improvement in health-related quality of life after otoplasty, with a 24.6 ± 20.6 average score on the global GCBI scale. The post-surgical score on the POS-Head/Neck surveys was significantly higher than the pre-surgical score (p < 0.0001), suggesting an improvement in patient-reported aesthetic appearance. Analysis of possible predictive factors showed significant differences regarding age. Children over 10 years of age obtained significantly higher scores in both questionnaires.ConclusionsOtoplasty has a clear positive impact on the quality of life of children with prominent ears. Age at the time of surgery appears to be a predictor of post-surgical outcomes. Our results would justify delaying surgery until 10 years old.

Deaf and hard-of-hearing children and adolescents’ mental health, Quality of Life and communication

Mental health problems and lower Quality of Life (QoL) are more common in deaf and hard-of-hearing – (D)HH – children than in typically hearing (TH) children. Communication has been repeatedly linked to both mental health and QoL. The aims of this study were to compare mental health and QoL between signing deaf and hard-of-hearing (DHH), hard-of-hearing (HH) and TH children and to study associations between mental health/QoL and severity of hearing loss and communication. 106 children and adolescents (mean age 11;8; SD = 3.42), 59 of them DHH and 47 HH, and their parents reported child mental health and QoL outcomes. Parents also provided information about their children's communication, hearing loss and education while their children's cognitive ability was assessed. Although (D)HH and their parents rated their mental health similar to their TH peers, about twice as many (D)HH children rated themselves in the clinical range. However, (D)HH children rated their QoL as similar to their TH peers, while their parents rated it significantly lower. Associations between communicative competence, parent-reported mental health and QoL were found, whereas severity of hearing loss based on parent-report had no significant association with either mental health or QoL. These results are in line with other studies and emphasise the need to follow up on (D)HH children's mental health, QoL and communication.

Learning Modality and Quality of Life Among US School-Age Children During the Coronavirus Pandemic.

Shifts from in-person learning to virtual and hybrid learning modes in response to the coronavirus pandemic potentially impacted children's physical, emotional, social, and academic development. This study examined the association between virtual, in-person, and hybrid learning modality with parent-reported quality of life among US students (kindergarten-12th) in early 2021. Parents reported current learning modality and physical, emotional, social, and school quality of life for children (aged 5-11, n=1381) and adolescents (aged 12-17, n=640). Multivariable logistic regression models assessed the odds of impaired quality of life by learning modality. Among children, hybrid and virtual learners had greater odds of impaired quality of life (adjusted odds ratio [aOR] 1.79, 95% confidence interval [CI] 1.22, 2.64 and aOR 1.57, 95% CI 1.17, 2.12, respectively) relative to in-person learners. Among adolescents, virtual learners had greater odds impaired physical (aOR 2.06, 95% CI 1.26, 3.38) and school function (aOR 2.23, 95% CI 1.38, 3.61) relative to in-person learners. Learning modality was associated with student well-being, and appropriate alternative learning modalities may differ for younger and older students in terms of educational quality and quality of life.

Piloting a Home Visual Support Intervention with Families of Autistic Children and Children with Related Needs Aged 0-12.

29 families with children (n = 20 males; mean age 6.59 years [Range 3.64-12.21 years SD 2.57]) receiving support for autism or related needs participated in the study. Parents engaged in an individualised assessment and intervention process through home visits, completing pre- and post-measures. Qualitative methods were used to explore the parents' experiences of the intervention. The intervention led to a statistically significant improvement in parent-reported quality of life (t28 = 3.09, p = 0.005) and parent-reported perception of autism-specific difficulties (t28 = 2.99, p = 0.006). Parents also reported improved access to resources and relevant information and increased confidence in using visual supports at home. The home visit model was strongly supported by the parents. The results provide initial evidence of the acceptability, practicality, and utility of the home-based visual supports intervention. These findings suggest that outreach into the family home may be a beneficial mechanism for delivering interventions related to visual supports. This study highlights the potential of home-based interventions to improve access to resources and information for families and the importance of visual supports in the home setting.

Evaluating safety and effectiveness of the early-onset sepsis calculator to reduce antibiotic exposure in Dutch at-risk newborns: a protocol for a cluster randomised controlled trial

IntroductionNewborns are at risk for early-onset sepsis (EOS). In the Netherlands, EOS affects less than 0.2% of newborns, but approximately 5% are treated with empirical antibiotics. These numbers form an...

Comparison of neurocognitive and quality-of-life outcomes in pediatric craniopharyngioma patients treated with partial resection and radiotherapy versus gross-total resection only.

The optimal management of pediatric craniopharyngioma patients remains controversial, shifting from radical resection (gross-total resection [GTR]) to a more conservative approach with partial resection/biopsy followed by radiotherapy (PR+RT). To the authors' knowledge, no previous studies have compared neurocognitive and quality-of-life (QOL) outcomes between the two main treatments. In this study, the authors compared changes in intellectual, adaptive, and QOL scores in children treated for craniopharyngioma with GTR and those treated with PR+RT. Patients underwent annual neurocognitive and QOL evaluations for up to 10 years posttreatment, including the Full-Scale IQ, Verbal Comprehension Index (VCI), Perceptual Reasoning Index (PRI), Working Memory Index (WMI), and Processing Speed Index (PSI). Child- and parent-reported QOL scores and adaptive behavior in different domains were assessed. General linear mixed models were used to examine change in scores over time by treatment group with adjustment for significant covariates. Scores from 43 patients treated between 2009 and 2019 (21 GTR, 22 PR+RT) were examined. Within the PR+RT group, 9 patients had intensity-modulated RT and 13 had proton beam therapy. The treatment groups were similar in sex (44% male) and age (median 7.3 years). There were no significant differences in the trajectory of intellectual functioning or QOL scale scores between the two groups. However, patients who underwent GTR exhibited significant improvement over time in overall adaptive behavior (p = 0.04) and conceptual skills (p = 0.01), which was not observed in patients treated with PR+RT. Long-term pediatric craniopharyngioma survivors treated with GTR and PR+RT have similar intellectual function and QOL. Larger studies are needed to explore small but clinically significant differences between the two groups.

Psychiatric Comorbidities in Pediatric Monogenic Diabetes due to GCK Mutation: Impact on Diabetes-Related Quality of Life.

Monogenic diabetes caused by mutation in the glucokinase gene (GCK-MD) is a rare disorder manifesting in childhood as mild, prevalent hyperglycemia. By consensus, it is managed by dietary supervision and infrequent consultations. However, its impact on the mental health of the affected children is largely unknown. To estimate the prevalence of psychiatric comorbidities in children with monogenic glucokinase-related diabetes (GCK-MD) and evaluate their association with quality of life (QoL). The study invited children with GCK-MD aged 5-18 years identified in the Central National Registry and treated in 3 pediatric diabetes centers in Poland. The control group comprised children with type 1 diabetes (T1D, the most common diabetes type in youth) matched for age and family history of diabetes. Participants underwent a semistructured clinical interview diagnostic for psychiatric comorbidities, questionnaires assessing behavioral problems, depressive symptoms, parental stress, and measuring general and diabetes-related QoL (PedsQl). We included 35 patients with GCK-MDMD and 199 with T1D. Eight (22.9%) GCK-MD patients were diagnosed with psychiatric disorder in their lifetime, compared with 16 (8.1%) in the T1D group (odds ratio 3.4 [95% confidence interval: 1.3-8.7]). Patients with GCK-MD showed better parent-reported general QoL (87.1±11.9 vs 82.0±14.0, P= 0.0060) and higher diabetes-related QoL in both parental (84.5±13.8 vs 74.1±15.2, P < 0.0001) and child's perspective (87.6±10.9 vs 77.3±13.9, P < 0.0001). Psychiatric disorders (+P) were associated with worse child-reported diabetes QoL (T1D+P 66.6±16.7, T1D-P 78.2±13.3, GCK-MD+P 79.6±16.3, GCK-MD-P 90.1±7.5, P= 0.0002). High prevalence of psychiatric disorders in children with GCK-MD and lower QoL emphasizes the need for psychologic surveillance in those otherwise mildly-treated patients.

Quality of Life (QoL) of Children and Adolescents Participating in a Precision Medicine Trial for High-Risk Childhood Cancer.

Precision medicine is changing the treatment of childhood cancer globally, however little is known about quality of life (QoL) in children and adolescents participating in precision medicine trials. We examined QoL among patients enrolled in PRISM, the Zero Childhood Cancer Program's precision medicine trial for high-risk childhood cancer. We assessed patient QoL via self-report (aged 12-17 years) and parent-proxy (aged 4-17 years) completion of the EQ-5D-Y. We analysed data using descriptive statistics and regression models. Patients (n = 23) and parents (n = 136) provided data after trial enrolment and following receipt of trial results and treatment recommendations (n = 8 patients, n = 84 parents). At enrolment, most patients were experiencing at least some difficulty across more than one QoL domain (81% patient self-report, 83% parent report). We did not find strong evidence of a change in QoL between timepoints, or of demographic or disease factors that predicted parent-reported patient QoL (EQ-VAS) at enrolment. There was strong evidence that receiving a treatment recommendation but not a change in cancer therapy was associated with poorer parent-reported patient QoL (EQ-VAS; Mdiff = -22.5, 95% CI: -36.5 to -8.5, p = 0.006). Future research needs to better understand the relationship between treatment decisions and QoL and would benefit from integrating assessment of QoL into routine clinical care.

Parent-reported quality of life in children with cochlear implants differs across countries.

Pediatric cochlear implantation affects communication skills and quality of life, specifically how children interact with others and feel about themselves. Numerous studies worldwide examine well-being among pediatric cochlear implant users, but none to date compare condition-specific quality of life across countries. This retrospective study compares parent-reported cochlear implant-specific quality of life summary data across 14 published studies spanning 11 countries and 9 languages. Sample size ranged from 7 to 370 participants, and children across studies varied in mean chronologic age (3.1–12.2 years), implantation age (1.5–4.6 years), and cochlear implant experience (1.3–8.2 years). Parents completed the Children with Cochlear Implants: Parental Perspectives (CCIPP) questionnaire, an instrument assessing parent-reported cochlear implant-specific quality of life, in their home language. Analysis of variance tests were run for each CCIPP subscale across studies using summary data to determine significant differences between published manuscripts. Across countries, parents of children with cochlear implants appraise communication, social relations, and self-reliance most positively, and the effects of implantation and supporting the child least positively. Cross-country analyses revealed a significant effect of study (country) on quality of life ratings in each domain, with the largest differences in the communication domain. Limited access to implant-related accommodations, cultural awareness of hearing loss, and varying parent expectations may explain country differences in parental ratings of quality of life. Culturally sensitive psychoeducation for the entire family may foster improved life satisfaction for pediatric cochlear implant users and their families.

The effect of physical activity on quality of life and parenting stress in children with attention-deficit/hyperactivity disorder: A randomized controlled trial

BackgroundPoorer quality of life (QoL) is commonly observed in children with Attention-deficit/Hyperactivity Disorder (ADHD). Parents of children with ADHD also perceived elevated levels of parenting stress. Previous research has documented the positive effects of physical activity (PA) on managing ADHD symptoms. It is critical to implement ADHD management with broader functioning from both children's and parents' perspectives. ObjectiveThis study aimed to examine whether PA would exert an influence on the QoL of children with ADHD and parenting stress of their parents. MethodsForty-three children with ADHD (6–12 years) were randomly assigned to the PA intervention and waitlist control groups. Children in the intervention group participated in a 12-week PA program. Parent-reported QoL and parenting stress were assessed before and immediately after the intervention. Analysis of covariance with a mixed factorial design of 2 (time: before vs. after intervention) × 2 (group: PA intervention vs. waitlist control) was conducted to examine changes in QoL and parenting stress over the 12 weeks. ResultsCompared to the control group, parents of children in the intervention group reported significant reduced overall parenting stress (p = .021, η2 = 0.142) and child domain of parenting stress (p = .024, η2 = 0.138) after the intervention. No significant improvement in QoL was documented in either group. ConclusionsThe participation of PA intervention positively impacts parenting stress perceived by parents of children with ADHD, which provides further evidence of the family-wide benefits of the PA intervention.

Parental perspectives on the quality of life of children with Down syndrome

Down Syndrome (DS) is the most common chromosome abnormality and the most frequent cause of developmental delay/intellectual disabilities in children. Although the investigation of the quality of life (QoL) is crucial in children with DS, relatively poor attention has been paid to this topic. The current study aimed to evaluate parent-reported QoL in a group of children with DS and identify children's individual and clinical features associated with different levels of QoL. We included in the study 73 children with DS (5–12 years) and investigated the parent-reported levels of QoL by means of the Pediatric Quality of Life Inventory. Cognitive level and the presence of behavioral difficulties were also evaluated. The overall parent-reported QoL of children with DS was high; emotional functioning was the domain with the highest level of QoL. Moreover, parents perceived low levels of QoL in children who exhibited low IQ, worse analogical reasoning, worse adaptive skills, more frequent challenging behaviors, more ritualistic/sameness behavior and more autistic symptoms. No differences emerged for family variables, namely parental education and employment, between the two groups with high and low QoL, as perceived by parents. The understanding of cognitive and behavioral factors - such as analogical reasoning, socio-communication abilities and challenging behaviors - related with different degrees of QoL in children with DS is crucial for the development of effective strategies to promote the improvement of the QoL.

Child, Parent, and Family Adjustment for Patients Followed in a Multidisciplinary Spina Bifida Clinic.

To characterize child, parent, and family adjustment for patients followed in a multidisciplinary spina bifida (SB) clinic. Participants were drawn from clinical cases seen through a multidisciplinary outpatient SB clinic at a children's hospital between 2017 and 2019. Participants included 209 youth under 19 years old who were diagnosed with SB and their parents. Self-reported internalizing symptoms were measured in youth in grade 3 through 12 using the 25-item Revised Children's Anxiety and Depression Scale-25 (RCADS-25). Self- and parent-reported quality of life and family functioning were obtained using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and Family Impact Modules. A total of 45.7% of children and adolescents reported at-risk psychosocial functioning on the PedsQL. In contrast, only 5% of patients reported clinically elevated internalizing symptoms on the RCADS. Parents' quality of life and family functioning in the study were higher than in most studies of parents of children with other chronic health conditions, children with attention deficit-hyperactivity disorder, and healthy control samples. Our findings indicate that children and adolescents with SB are at risk for poor health-related quality of life (HRQOL); however, poorer HRQOL may not necessarily be associated with more severe psychiatric symptoms in this population. Examining resilience factors that may help to buffer against challenges to HRQOL will be important in informing future interventions.

Predictors of Functional School Outcome in Children With Pediatric Acquired Brain Injury.

ObjectiveAmong the variety of domains that may be impacted after pediatric acquired brain injury (pABI) are functional school outcomes. The purpose of this study was to identify demographic, medical, and psychological factors associated with impairments in functional school outcomes, defined as school absence, need of educational and psychological services, quality of life (QoL) in the school setting, and academic performance in children with pABI, with a specific emphasis on the significance of fatigue.Materials and MethodWe used baseline data from a randomized controlled trial. The sample consisted of seventy-six children aged 10 to 17 (M = 13 yrs) with pABI in the chronic phase (>1 year). All completed assessments of school-related QoL, academic performance, global functioning, fatigue, IQ, behavioral problems, and executive function.ResultsFatigue, IQ, global functioning, behavioral problems, and sex emerged as potential predictors for functional school outcomes. Of note, overall fatigue emerged as the strongest potential predictor for parent-reported QoL in school (β = 0.548; p < 0.001) and self-reported QoL in school (β = 0.532; p < 0.001).ConclusionsFollowing pABI, specific psychological, medical, and demographic factors are associated with functional school outcomes. Neither of the injury-related variables age at insult and time since insult were associated with functional school outcomes. Overall, our findings may suggest that a reintroduction to school with personalized accommodations tailored to the child's specific function and symptoms, such as fatigue, is recommended.

Quality of Life of Children Born with a Congenital Heart Defect

To identify subgroups with a congenital heart defect (CHD) at risk of health-related quality of life (QoL) impairment at 8years of age according to their medical and surgical management. From a prospective population-based cohort study, 598 patients with CHD were subdivided according to their medical and surgical management: (1) CHD followed-up in an outpatient clinic, (2) complete repair before age 3years, (3) complete repair after age 3years, (4) palliative repair, or (5) CHD with spontaneous resolution (reference subgroup). Self-reported QoL and parent-reported QoL were measured using the Pediatric Quality of Life Inventory version 4.0 (score range, 0-100) at age 8years. Multivariable regression analysis and Cohen effect size were used to compare outcomes across the CHD groups. Self-reported and parent-reported QoL scores for the palliative repair subgroup were lower (β=-2.1 [95% CI, -3.9 to -0.2] and β=-16.0 [95% CI, -22.4 to -9.5], respectively), with a large effect size (δ=-0.9 [95% CI, -1.4 to -0.4] and δ=-1.3 [95% CI, -1.8 to -0.7], respectively). Parent-reported QoL scores for the complete repair after age 3years subgroup were lower (β=-9.2; 95% CI, -15.0 to -3.5), with a large effect size (δ=-0.9; 95% CI, -1.4 to -0.5). Self-reported QoL scores for the complete repair before age 3years subgroup was lower (β=-1.3; 95% CI, -1.9 to -0.6), with a small effect size (δ=-0.4; 95% CI, -0.6 to -0.2). The QoL of children with CHD who experienced a hospital intervention is reduced at age 8years. Patient age at the last cardiac intervention might influence QoL at 8years.

Repeated measures discriminant analysis using multivariate generalized estimation equations.

Discriminant analysis procedures that assume parsimonious covariance and/or means structures have been proposed for distinguishing between two or more populations in multivariate repeated measures designs. However, these procedures rely on the assumptions of multivariate normality which is not tenable in multivariate repeated measures designs which are characterized by binary, ordinal, or mixed types of response distributions. This study investigates the accuracy of repeated measures discriminant analysis (RMDA) based on the multivariate generalized estimating equations (GEE) framework for classification in multivariate repeated measures designs with the same or different types of responses repeatedly measured over time. Monte Carlo methods were used to compare the accuracy of RMDA procedures based on GEE, and RMDA based on maximum likelihood estimators (MLE) under diverse simulation conditions, which included number of repeated measure occasions, number of responses, sample size, correlation structures, and type of response distribution. RMDA based on GEE exhibited higher average classification accuracy than RMDA based on MLE especially in multivariate non-normal distributions. Three repeatedly measured responses namely severity of epilepsy, current number of anti-epileptic drugs, and parent-reported quality of life in children with epilepsy were used to demonstrate the application of these procedures.