Children's HRQoL Research Articles

Health-related quality of life and its determinant factors in Thai children with cancer: parents vs. children perspectives

BackgroundHealth-related quality of life (HRQOL) is a vital assessment to demonstrate the achievement in pediatric cancer care parallels that of medical treatment. The Pediatric Quality of Life Inventory (PedsQL) 3.0 Cancer Module in the Thai Version has become a standard tool to access the HRQOL among Thai children with cancer and their families. This study aimed to explore the HRQOL and factors related to HRQOL among pediatric oncology patients using the PedsQL 3.0 Cancer Module.MethodsIn 2018–2019, a single-institution, cross-sectional study was conducted among children with cancer and their families in Bangkok, Thailand. A paired-sample t-test was performed to evaluate the differences between the HRQOL scores of the child and parents' reports. Linear regression was used to evaluate factors associated with HRQOL and which particular domains of the PedsQL 3.0 Cancer Module were influenced.ResultsEighty-five children with cancer and their families were enrolled. The patients’ mean age was 10.82 ± 5.48 years. The most common cancer types included acute lymphoblastic leukemia (n = 32, 67%), central nervous system tumors (n = 13, 15%), osteosarcoma (n = 10, 27%) and neuroblastoma (n = 9, 24%), in rank. The mean HRQOL scores in child and parent reports were 74.37 ± 15.7 and 70.42 ± 17.15, respectively (p = 0.034). Factors negatively correlated to HRQOL in parent reports were the number of outpatient visits (p = 0.019) and hospital admissions (p = 0.002). The number of hospitalizations was the only independent factor that affected HRQOL (p = 0.044). The number of outpatient visits and/or hospital admissions was influenced by pain and hurt, nausea, procedural anxiety and communication domains (p < 0.05). Only the number of hospitalizations was an independent factor influencing the procedural anxiety domain in HRQOL (p = 0.005).ConclusionHRQOL among Thai children with cancer was desirable from both children's and parent's perspectives. Differences between child and parent HRQOL scores were observed. The number of outpatient visits and hospital admissions affected HRQOL, particularly in the procedural anxiety aspect.Trial registrationThai Clinical Trials Registry (TCTR) Number: TCTR20200904001 (04/09/2020), https://www.thaiclinicaltrials.org/.

The RETRIEVE Checklist for Studies Reporting the Elicitation of Stated Preferences for Child Health-Related Quality of Life.

Recent systematic reviews show varying methods for eliciting, modelling, and reporting preference-based values for child health-related quality-of-life (HRQoL) outcomes, thus producing valuesets with different characteristics. Reporting in many of the reviewed studies was found to be incomplete and inconsistent, making them difficult to assess. Checklists can help to improve standards of reporting; however, existing checklists do not address methodological issues for valuing child HRQoL.Existing checklists also focus on reporting methods and processes used in developing HRQoL values, with less focus on reporting of the values' key characteristics and properties. We aimed to develop a checklist for studies generating values for child HRQoL, including for disease-specific states and value sets for generic child HRQoL instruments. A conceptual model provided a structure for grouping items into five modules. Potential items were sourced from an adult HRQoL checklist review, with additional items specific to children developed using recent reviews. Checklist items were reduced by eliminating duplication and overlap, then refined for relevance and clarity via an iterative process. Long and short checklist versions were produced for different user needs. The resulting long RETRIEVE contains 83 items, with modules for reporting methods (A-D) and characteristics of values (E), for researchers planning and reporting child health valuation studies. The short RETRIEVE contains 14 items for decision makers or researchers choosing value sets. Applying the RETRIEVE checklists to relevant studies suggests feasibility. RETRIEVE has the potential to improve completeness in the reporting of preference-based values for child HRQOL outcomes and to improve assessment of preference-based value sets.

The impact of posterior urethral valves on pediatric quality of life and family function: Prospective analysis of serial patients managed in a dedicated multidisciplinary clinic

Posterior urethral valves (PUV) is a chronic condition that can adversely impact child and family health related quality of life (HRQOL). Surprisingly, to date, the impact of this condition on the QOL of children with PUV has not been studied. Thus, our aim is to evaluate this important aspect of care using validated questionnaires in our institutional PUV clinic. From December 2022 to January 2024, the PedsQL Inventory and associated family impact module was distributed in our PUV clinic. Higher scores reflect better HRQoL and less impact on family. Children >8 years old completed the tool themselves, otherwise parents completed the tools on behalf of the child. We compared PUV scores against reported psychometric data from healthy children and other chronic illnesses. A total of 112 families completed the questionnaires. The total HRQoL score was 80±13. Overall, we noted that the domains reflecting psychosocial impact were significantly lower than those of physical well-being (76±16 vs. 89±15 for psychosocial and physical impact, respectively; p<0.01). There was a significant difference in the psychosocial emotional impact for children managed with clean intermittent catheterization (CIC) compared to those who were not (69±21 vs. 81±16; p=0.005) (Table 2). In addition, we noted that children with PUV scored similar to healthy controls, but higher than children with other chronic illnesses. With respect to the impact on family, overall, parent, and family impacts were 76±19, 78±21, and 81±21, respectively. Chronic illness has been associated with a negative impact on HRQoL in both adults and children. We noted similar findings the present study, particularly for young children and those who are maintained on CIC. To our knowledge, this is the first study to evaluate the impact of PUV on a child's HRQoL as well as the impact on the family, and to document a negative psychosocial impact of CIC in this population. However, there are some important limitations to be addressed including relying on families to complete questionnaires accurately during busy clinic visits and the lack of controls from the same environment. When compared to healthy controls, PUV patients score similarly in HRQoL assessment. In addition, children <3years of age report a negative impact on physical well being, and CIC negatively impacts the emotional well-being. These data can be used to advocate for better mental health supports and social work for these children.

Evaluating case management for caregivers of children with spinal muscular atrophy type I and II-an exploratory, controlled, mixed-methods trial.

Spinal muscular atrophy (SMA) is a rare neuromuscular disease requiring various clinical specialists and therapists to provide care. Due to the disease's dynamic nature and the long distances between specialized centers and local providers, integrating care between disciplines can be challenging. Care that is inadequately integrated can compromise the quality of care and become a burden for patients and families. This trial aimed to improve the care of patients through a case management (CM) intervention. We conducted an exploratory, controlled, two-arm trial with pre-, post-, and follow-up measures (process and outcome evaluation). Proof of efficacy based on statistical significance was not our primary study objective since we were investigating a rare disease. Primary outcomes were caregivers' HRQoL and caregiver-rated quality of care integration. Our secondary outcome was the children's HRQoL. Questionnaires and semi-structured interviews yielded heterogeneous results depending on caregivers' level of experience and desire (or possibility) to delegate care tasks. Despite differing perceptions, all participants supported the establishment of a care coordination model. We recommend CM immediately after diagnosis to provide the greatest benefit to families. We hope that our trial will support the further development of CM interventions that can be customized for specific diseases.

Valuing EQ-5D-Y: the current state of play

BackgroundFor nearly a decade, value sets for the EQ-5D-Y were not available, reflecting challenges in valuing child HRQoL. A methodological research programme led to publication of a valuation protocol in 2020, which was rapidly taken up by local study teams. By the end of 2022, between 11 and 17 EQ-5D-Y value sets will be available, more than for any other child HRQoL measure. It is timely to review the experience of those using the protocol to identify early learnings and remaining issues where more research is needed.MethodsIn June 2021, the EuroQol Group organised a three-day workshop, bringing together all those involved in EQ-5D-Y value set studies and related methodological research concerning EQ-5D-Y and valuation. Workshop discussions were captured by note taking and recording all sessions and online chat. A narrative summary of all sessions was produced and synthesised to identify points of agreement and aspects of methods where uncertainty remains.ResultsThere was broad agreement that DCE is working well as the principal valuation method. However, the most appropriate means of anchoring the latent scale values produced by DCE remains unclear. Some studies have deviated from the protocol by extending the number of states included in TTO tasks, to better support modelling of DCE and TTO. There is ongoing discussion about the relative merits of alternative variants of TTO and other methods for anchoring. Very few studies have consulted with local end-users to gauge the acceptability of methods used to value EQ-5D-Y.ConclusionsPriority areas for research include testing alternative methods for anchoring DCE data; exploring the preferences of adolescents; and scale differences in values for EQ-5D-Y and adult EQ-5D states, and implications of such differences for the use of EQ-5D-Y values in HTA. Given the normative elements of the protocol, engaging with HTA bodies and other local users should be the first step for all future value set studies. Value sets undertaken to date are for the three-level EQ-5D-Y. However, the issues discussed in this paper are equally relevant to valuation of the five-level version of EQ-5D-Y; indeed, similar challenges are encountered valuing any measure of child HRQoL.

The cost-effectiveness of a proportionate parenting programme for primary caregivers and their child: an economic evaluation using evidence from the E-SEE Trial

BackgroundBehavioural and mental disorders have become a public health crisis; averting mental ill-health in early years can achieve significant longer-term health benefits and cost savings. This study assesses whether the Enhancing Social-Emotional Health and Wellbeing in the Early Years (E-SEE-Steps)—a proportionate universal delivery model comprising the Incredible Babies book (IY-B) and the Incredible Years Infant (IY-I) and Toddler (IY-T) parenting programmes is cost-effective compared to services as usual (SAU) for the primary caregiver, child and dyad.MethodsUsing UK data for 339 primary caregivers from the E-SEE trial, we conducted a within-trial economic evaluation assessing the cost-effectiveness of E-SEE Steps. Health outcomes were expressed in quality-adjusted life-years (QALY) and costs in UK pounds sterling (2018–19). Missing data were populated via multiple imputation and costs and QALYs discounted at 3.5% per annum. Cost-effectiveness results were conducted for primary caregivers, children and dyad using econometric modelling to control for patient co-variables. Uncertainty was explored through scenario and sensitivity analyses.ResultsThe average cost of E-SEE Steps intervention was £458.50 per dyad. E-SEE Steps was associated with modest gains in primary caregiver HRQoL but minor decrements in child HRQoL compared to SAU. For primary caregivers, E-SEE Steps was more effective (0.034 QALYs) and more costly (£446) compared to SAU, with a corresponding incremental cost-effectiveness ratio (ICER) of £13,011 per QALY. In children, E-SEE Steps was strictly dominated with poorer outcomes (-0.005 QALYs) and greater costs (£178) relative to SAU. QALY gains in primary caregivers exceeded those QALY losses found in children, meaning E-SEE Steps was more effective (0.031 QALYs) and costly (£621) for the dyad (ICER: £20,062 per QALY). All scenario analyses found E-SEE Steps cost-effective for the dyad at a £30,000 per QALY threshold. Sensitivity analyses found significant cost reductions from expansions in programme delivery and attendance.ConclusionsE-SEE Steps achieved modest health gains in primary caregivers but small negative effects on children and was more costly than SAU. E-SEE Steps appears cost-effective for the dyad, but the results should be interpreted with caution given the potential detrimental impact on children.Trial registrationISRCTN11079129; Pre participant trial enrolment, 11/05/2015

Parenting Stress over the First Year of Inflammatory Bowel Disease Diagnosis.

A diagnosis of inflammatory bowel disease (IBD) in children can disrupt the family, including altered routines and increased medical responsibilities. This may increase parenting stress; however, little is known about parenting stress changes over the first year following an IBD diagnosis, including what demographic, disease, or psychosocial factors may be associated with parenting stress over time. Fifty-three caregivers of children newly diagnosed with IBD (Mage = 14.17 years; Mdays since diagnosis = 26.15) completed parenting stress (Pediatric Inventory for Parents), child anxiety (Screen for Child Anxiety-Related Disorders), and child health-related quality of life (HRQOL; IMPACT) measures within 1 month of diagnosis and 6-month and 1-year follow-ups. Multilevel longitudinal models assessed change and predictors of parenting stress. Parenting stress was significantly associated with greater child anxiety and lower HRQOL at diagnosis (rs = 0.27 to -0.53). Caregivers of color and caregivers of female youth reported higher parenting stress at diagnosis (ts = 2.02-3.01). Significant variability and declines in parenting stress were observed across time (ts = -2.28 and -3.50). In final models, caregiver race/ethnicity and child HRQOL were significantly related to parenting stress over the first year of diagnosis (ts = -2.98 and -5.97). Caregivers' parenting stress decreases across 1 year of diagnosis. However, caregivers of color and those rating their child's HRQOL as lower may be at risk for greater parenting stress. More research is needed to understand why caregivers of color reported greater parenting stress compared to White caregivers. Results highlight the importance of providing whole-family care when a child is diagnosed with IBD.

Assessing the effect of child\u2019s gender on their father\u2013mother perception of the PedsQL\u2122 4.0 questionnaire: an iterative hybrid ordinal logistic regression/item response theory approach with Monte Carlo simulation

BackgroundThis study aimed at investigating the possible confounding effect of children’s gender on the parents’ dyads perception of their child HRQoL at both item and scale levels of PedsQLTM4.0 questionnaire.MethodsThe PedsQL™ 4.0 Generic Core Scales were completed by 573 children and their father-and-mother dyads. An iterative hybrid ordinal logistic regression/item response theory model with Monte Carlo simulation was used to detect differential item functioning (DIF) invariance across mothers/fathers and daughter/sons.ResultsAssessing DIF across mother–daughter, father–daughter, mother–son, and father–son dyads revealed that although parents and their children perceived the meaning of some items of PedsQLTM4.0 instrument differently, the pattern of fathers’ and mothers’ report does not vary much across daughters and sons.ConclusionIn the Persian version of PedsQLTM4.0, the child’s gender is not a confounding factor in the mothers’ and fathers’ report with respect to their daughters’ and sons’ HRQoL. Hence, paternal proxy-reports can be included in studies, along with maternal proxy-reports, and the reports can be combined short of concerning children gender, when looking at parent–child agreement.

Concordance between child’s and parents’- reported Health-related quality of life and overweight

Abstract Background Health-related quality of life (HRQoL) of children is an important health outcome which has frequently been investigated regarding children's chronicle illnesses using parents proxy-reported HRQoL. Obesity is an increasingly frequent condition in children, for which the evidence about perceived quality of life is lacking. The aim of our study is to examine the concordance between child's and parents'- reported HRQoL according to children's weight status. Methods A cross-sectional study was conducted in 2019 among 128 children, aged 6-10, recruited in a primary school of Imola (Italy). Children were divided in Group1 (G1: normal-underweight) and Group2 (G2: overweight-obese) using the International Obesity Task Force cut points. HRQoL was assessed using the Italian version 4.0 of Paediatric Quality of Life (PedsQL) questionnaire. We obtained self-reported children's HRQoL total score and the parents' perceived children's HRQoL total score. Each score had two subscales: one for physical health and one for emotional, social and school functioning. Results In G1 there were 86 children and in G2 42. The correlation between the children's and parents' HRQoL scores is low in G1 (physical health: 0.24; emotional, social and school functioning: 0.15). Children in G2 and their and parents' perception of physical health are poorly correlated (r=-0.09) and those of emotional, social and school functioning are well correlated (r = 0.43).We observed that in case of discordant HRQoL results, parents usually overestimate their children's HRQoL. Conclusions Correlation between the children's and parents' HRQoL scores is low in G1. In G2 children's and parents' perception are concordant for emotional, social and school functioning and unrelated for physical health. It would be useful to investigate whether these results depend from lack of communication between parents and children or lack of parents' awareness of health-related problems with obesity. Key messages Parents and children have a discordant perception of physical health quality of life. Further studies should investigate the reasons why these results are discordant.

Parent IMPACT-III: Development and Validation of an Inflammatory Bowel Disease-specific Health-related Quality-of-life Measure.

The present study aimed to validate the parent-proxy IMPACT-III (IMPACT-III-P) in a sample of youth diagnosed with inflammatory bowel disease (IBD). Parent-proxy report measures are standard for pediatric psychosocial assessment, and the IMPACT-III-P will provide a more comprehensive representation of HRQOL. Reliability and validity analyses were conducted. Parents (N = 50) of youth 8 to 17 years with IBD reported on their child's HRQOL (IMPACT-III-P and PedsQL-4.0) and depression (BASC-2); youth reported on their HRQOL (child IMPACT-III), pain interference (PROMIS Pain Interference), and disease symptoms; and physicians completed measures of disease activity. Criterion validity was established as the IMPACT-III-P was strongly, positively associated with the PedsQL (r = 0.59, P < 0.001). Convergent validity was supported as higher IMPACT-III-P scores were associated with less pain interference (r = -0.41, P < 0.01) and lower depression (r = -0.41, P < 0.01). Discriminant validity was partially supported, as higher IMPACT-III-P scores were associated with lower child-reported symptoms (r = -0.41, P < 0.01), but scores did not differ based on inactive, mild, or moderate/severe disease activity groups as rated by physicians. Internal consistency, parent-child agreement, and item-level analyses revealed strong reliability. The IMPACT-III-P demonstrated strong validity and reliability. Parents and children had similar reports of HRQOL, with parents rating child HRQOL slightly lower. Findings support the use of the IMPACT-III-P for youth 8 to 17 years old to use in accordance with the child IMPACT-III to provide valuable information regarding HRQOL in youth with IBD.

A Comparison of Parent and Child Evaluations of Quality of Life in Pediatric Neurosurgery

Abstract INTRODUCTION Health-related Quality of Life (HRQoL) broadly encompasses many physical, economical, and psychosocial factors. In pediatric neurosurgery, patient and family HRQoL is an important factor as chronic, debilitating disease affects patients and their caregivers considerably. HRQoL affects a child's physical ability, social and psychological wellbeing, and educational performance. Understanding parental perception of their child's HRQoL is important to better understand family relationships and manage expectations. In this study we sought to examine the differences between patient and parent perceptions of HRQoL and the factors that influence these differences. METHODS A standardized survey was systematically administered by a healthcare provider in an outpatient neurosurgery clinic for a single neurosurgeon from 2015 to 2018. Surveys were administered to both patient and parents for each clinic visit. The survey tool assessed physical, psychological, and social function and school performance. Data were analyzed using IBM SPSS 26. This study was conducted under IRB approval. RESULTS A total of 201 encounters with 182 patients were included. On average, parent and patient assessments of overall QoL differed by 10.5% (SD 10.4) and assessments of physical function by 13% (SD 16.9). Assessments of psychosocial wellbeing differed by 11.1% (SD 9.8). Across every domain assessed, parents' reported scores were lower than children's (P &lt; .01). There was a negative correlation between patient psychosocial scores and overall score differences (r = −0.15, P &lt; .03). Overall score differences were not influenced by race, ethnicity, age at diagnosis, or repeat procedures. CONCLUSION Assessment of patient HRQoL often variwa between patients and their caregivers. Parents typically have more negative assessments of their children's HRQoL, and this difference presented as lower scores reported by parents compared to patients in our study. We believe that understanding these differences in perception will help guide supportive services and expectation management when caring for and counseling pediatric neurosurgical patients and their families.

Examining Uncertainty in Illness in Parents and Children With Chronic Kidney Disease and Systemic Lupus Erythematosus: A Mediational Model of Internalizing Symptoms and Health-Related Quality of Life.

To examine if parent illness uncertainty is indirectly associated with child depression, anxiety, and HRQOL in the CKD/SLE population. Parent-child dyads (N = 31) from outpatient rheumatology and nephrology clinics included children (ages 9-18) diagnosed with CKD (Stage 1, 2, or nephrotic syndrome) or SLE. Parents completed demographic and uncertainty measures and children completed uncertainty, depression, anxiety, and HRQOL measures. This cross-sectional study examined mediational models using the percentile bootstrapping method. Parent uncertainty had an indirect effect on child depression, anxiety, and HRQOL through the mediator, child uncertainty. In other words, parents' illness uncertainty regarding their child's condition correlates to the child's illness uncertainty, which then is associated with the child's mental health and wellbeing. Reverse mediations illustrated that parent uncertainty did not mediate child uncertainty and outcome variables. Results extend previous research by examining parent and child illness uncertainty in understudied conditions (CKD/SLE) and the relationship to outcome variables commonly related to depression (e.g., anxiety and HRQOL). Findings allow health psychologists and medical personnel to understand the impact of uncertainty on the child's wellbeing and HRQOL. Clinical implications, including using specialized interventions to address illness uncertainty, are discussed.

HRQoL in Barth Syndrome: Agreement between Child Self-reports and Parent Proxy-reports and Its Relationship to Parental HRQoL.

Purpose:Barth syndrome is an X-linked rare disorder that typically affects only males. This study investigates 1) agreement between child self-reports and parent proxy-reports of HRQoL in boys with Barth syndrome and 2) relationship between parental HRQoL and parent proxy-reports of HRQoL for the child.Materials and methods:Twenty-eight boys with Barth syndrome and their parents participated in this study. The PedsQL™ 4.0 and the PedsQL™ Family Impact Module were used to measure HRQoL of the boys, and the parents’ HRQoL, respectively. The Intraclass Correlation Coefficient was used to test agreement between the child self-reports and parent proxy-reports of HRQoL. The Spearman correlation coefficient was used to test the relationship between parental HRQoL and parent proxy-reports of HRQoL for the child.Results:The agreement between the child self-reports and the parent proxy-reports showed moderate-to-good agreement. Higher parental HRQoL was significantly related to higher ratings of the parents on their children’s HRQoL (p < .05).Conclusions:This study broadens understanding of HRQoL of boys with Barth syndrome using both child self-reports and parent proxy-reports. The findings indicate that the parent proxy-report of HRQoL should be used in conjunction with the child self-report when making client-centered health decisions.

Health-related quality of life in Spanish coeliac children using the generic KIDSCREEN-52 questionnaire.

Overall, the KIDSCREEN-52 questionnaire revealed that CD had no substantial negative impacts on the children's QOL. However, some concerns from the children's perspective were identified, such as issues regarding relationships with their peers. These issues will need to be addressed in order to improve QOL in children with CD. What is Known: • According to the Spanish version of the specific CDDUX, parents and children felt CD had no substantial negative impacts on their HRQOL. What is New: • According to the generic KIDSCREEN-52 questionnaire, QOL in Spanish coeliac children does not seem to be negatively affected by the disease in most general aspects of life. • Parents have a worse perception of their children's HRQOL than their children themselves.

Functional vision and quality of life in children with microphthalmia/anophthalmia/coloboma—a cross-sectional study

To determine the child's and parental perception of functional visual ability (FVA), vision-related and health-related quality of life (VR-QoL, HR-QoL) in children with microphthalmia/anophthalmia/coloboma (MAC). Between June 25, 2014, and June 3, 2015, we carried out a cross-sectional observational study at Moorfields Eye Hospital, London, UK, enrolling 45 children 2-16years of age with MAC attending our clinics, and their parents. To assess FVA, VR-QoL, and HR-QoL we asked participants to complete three validated tools, the Cardiff Visual Ability Questionnaire for Children (CVAQC), the Impact of Vision Impairment for Children (IVI-C) instrument, and the PedsQL V 4.0. The main outcome measures were the FVA, VR-QoL, and HR-QoL scores, reported by children and parents. In children with MAC, FVA is moderately reduced, with a median CVAQC score of -1.4 (IQR, -2.4 to 0.4; range, -3.0 [higher FVA] to +2.8 [lower FVA]). VR-QoL and HR-QoL are greatly reduced, with an IVI-C median score of 63 (IQR, 52-66; normal VR-QoL, 96), a median self-reported PedsQL score of 77 (IQR, 71-90; normal HR-QoL, 100) and parental score of 79 (IQR, 61-93), and a family impact score of 81 (67-93). Psychosocial well-being scores are lower than physical well-being scores. Parents and children have a different perception of the impact of the condition on the child's HR-QoL. MAC has a significant impact on a child's FVA and QoL, similar to that described by children with acute lymphoblastic leukaemia and chronic systemic conditions. Children and families may benefit from psychosocial support.

Health-related quality of life in paediatric patients with congenital heart defects: association with the type of heart defect and the surgical technique.

Patients who had received corrective surgery of several congenital heart defects (surgical VSD closure, Fallot, TGA after atrial or arterial switch or Fontan-type circulation for univentricular AV-connection) were interviewed in the office of their home peadiatric cardiologist. HRQoL in children along 7 dimensions was assessed using a standardised questionnaire (PEDQoL); information on the medical case history of each respondent was also collected. HRQoL was assessed in the questionnaire by asking about the frequency (never, rarely, often, always) of specific negative experiences; more frequent experiences indicate a lower quality of life. Frequency expressions were transformed into numerical values (25, 50, 75, 100%), and mean values for HRQoL were calculated for each patient and for each domain. Differences in HRQoL among patients with different types of interventions were analysed using the Mann-Whitney Test or the Kruskal-Wallis Test as appropriate; p values<0.05 were considered to indicate significant differences, while p values<0.1 were considered to indicate notable trends. Patients: 169 patients (60% male, 40% female) were part of the study. The mean age was 11.6years; 50 patients had surgical VSD closure, 52 surgeries for Tetralogy of Fallot (22 transannular patch, 18 no transannular patch, 12 inaccurate description), 40 had complete transposition of the great arteries (28 atrial switch, 12 arterial switch), 22 had a Fontan-type procedure for univentricular AV-connection. HRQoL differed little among patients with different CHDs for the items "relation to friends," "interactions in the affected families", and "own body image". For other items, notable differences emerged: patients with univentricular hearts rated their physical capacity worse and showed a tendency towards negative ratings in other domains. On the other hand, patients after Fallot or TGA correction tended to rate their HRQoL in several domains as relatively high. Focusing on the mode of surgery for Fallot repair, respectively, TGA correction the only significant difference was found for "physical capacity" in TGA (atrial vs. arterial repair). Mustard patients tended to rate most items worse. Physical capacity was rated worst by patients with a Fontan circulation. Repeated surgery led to lower ratings for all domains except "physical capacity" and "body image". Different surgical techniques for CHD do not affect children's and adolescents' self-reported HRQoL to the extent that one would expect. This observation is in line with observations in groups of children with different chronic diseases. Specialised psychosocial support is necessary in order to maintain this positive self-evaluation and to ensure patients are able to lead autonomous personal and professional lives.

Utilization of Quality-of-life assessment Questionnaires for Intermittent Exotropia in China

To evaluate the reliability and validity of Chinese version of Quality-of-life assessment Questionnaires for Intermittent Exotropia (CIXTQ). Cross-sectional study. The original English version of the IXTQ was translated into Chinese. The final Chinese version of the IXTQ (CIXTQ) consists of 3 parts: the 12-item child CIXTQ (for children ≥5 and<8 years old and ≥8 and<18 years old, respectively, to assess their health quality of life (HRQoL)), the 12-item proxy CIXTQ (for parents to assess children's HRQoL), and the 17-item parent CIXTQ (containing functional, psychosocial, and surgery subscales; for parents to assess their HRQoL). 175 IXT children and 151 control children along with one of their parents were recruited to answer the CIXTQ. Cronbach's α coefficient and split-half reliability were used to test the internal consistency reliability of the CIXTQ. Kappa coefficient was used to assess the test-retest reliability. Scale-level content validity index/average (S-CVI/Ave) was used to evaluate the content validity of the CIXTQ. Principal component analysis (PCA) was used to verify the construct validity of the parent CIXTQ. Comparison of different CIXTQ scores in IXT patients with controls was conducted by independent-samples t test to evaluate the discriminate validity of the CIXTQ. For all scales and subscales of the CIXTQ in different age groups, the Cronbach's α ranged from 0.804 to 0.963; the split-half reliability ranged from 0.658 to 0.963 and was higher than 0.7 except for the proxy CIXTQ for children aged ≥5 and<8 years old; the test-retest reliability ranged from 0.569 to 0.944. The S-CVI/Ave of the child, proxy and parent CIXTQ was 0.988, 0.988 and 0.966, respectively. Principal factors identified by PCA for the parent CIXTQ could be regrouped into the originally described 3 subscales which was functional, social psychology and surgery in different age groups. The mean scores of all the scales and subscales among IXT children and their parents (8.0±12.5-81.6 ±15.1) were significantly lower than these among control children and their parents (83.1±11.3-99.6±1.2) (t values range from -50.36 to -6.93, P<0.001). The CIXTQ are useful tools to evaluate the influence of IXT on HRQoL among Chinese children and their parents. (Chin J Ophthalmol, 2016, 52: 596-603).

Level of Parent–Asthmatic Child Agreement on Health-Related Quality of Life

Background. Direct assessment of health-related quality of life (HRQοL) is necessary to understand the impact of a disease on patients' well-being and to evaluate clinical interventions. There is substantial debate in the literature on pediatric health outcomes concerning who is the most appropriate respondent when assessing children's HRQoL. Objective. To evaluate the level of agreement between child self-reports and parent proxy-reports concerning HRQoL in children with asthma. Methods. A total of 504 children with asthma and their parents who were referred to outpatient asthma clinic participated in this study. Subjects were divided into two age groups (4–7- and 8–14-year-olds). The DISABKIDS chronic generic measure—long form (DCGM-37), the DISABKIDS smiley measure (DSM), and the DISABKIDS condition-specific modules for asthma were used. The level of agreement between children and parents was evaluated using intra-class correlation coefficients and Bland–Altman analysis. Results. A satisfactory level of agreement between younger children and their parents except those with severe asthma with both methods was observed; the level of agreement in the older ones was moderate with the exception of general subscale. Asthmatic children's mean HRQoL scores were significantly lower than their parents for all subscales, except children with severe asthma in the older group, who stated lower HRQoL than their parents in most of the domains except those of Impact and Worry that were in close agreement. Fathers' assessment of HRQoL score was closer to their children's self-assessment in both groups. Families with higher family income showed a greater level of agreement. Conclusions. Our study illustrated that parents overestimate HRQoL of their children with asthma even though moderate agreement between child self-reports and parent proxy-reports on HRQoL was noticed. Fathers seem to be better proxy-reporters than mothers. Any evaluation of current approaches to measuring children's HRQoL needs to allow both parent and child to give their own perspective.

Reliability and validity of the PedsQL™ Multidimensional Fatigue Scale in Japan

To examine the reliability and validity of the Japanese-language version of the PedsQL™ Multidimensional Fatigue Scale and to investigate the agreement between child self-reported fatigue and parent proxy-reported fatigue. The Japanese-language version of the PedsQL™ Multidimensional Fatigue Scale was administered to 652 preschoolers and schoolchildren aged 5-12 and their parents, and to 91 parents of preschool children aged 1-4. Internal consistency reliability was 0.62-0.87 for children and 0.81-0.93 for parents. Known-group validity was examined between a group of healthy samples (n=530) and chronic condition sample (n=102); the chronically ill group reported a significantly higher perceived fatigue problem. Correlations between child self- and parent proxy reports ranged from poor to fair. In subgroups identified by cluster analysis based on child self-reported scores, the greatest agreement between child and parent reports was seen in the good HRQOL group, while the least occurred in the poor HRQOL group. The parents overestimated their child's fatigue more when the child's HRQOL was low. The Japanese-language version of the PedsQL™ Multidimensional Fatigue Scale demonstrated good reliability and validity and could be useful in evaluating Japanese children in school and health care settings.

Wie beurteilen psychisch kranke Eltern die gesundheitsbezogene Lebensqualität ihrer Kinder?

To assess health-related quality of life (hrQoL) of children with a mentally ill parent, and its associations with the parent's illness (diagnoses, severity of disease, current symptoms) and family functioning, 51 mentally ill parents rated their children's hrQoL using the KINDL-R, a multidimensional hrQoL questionnaire for children. Parents rated their current psychiatric symptoms on the SCL-14 (Symptom Checklist-14) and family functioning on the FB-A ("Familienbögen"). The parents' therapists (psychologists or psychiatrists) provided psychiatric diagnoses as well as global ratings of disease severity (CGI) and patient's family functioning. Compared to the general population, parents rated their children's hrQoL significantly lower concerning the dimensions "Psychological Well-Being" and "Family': HrQoL ratings were moderately correlated with the parent's current depressive symptoms and moderately to highly correlated with family functioning from the parent's perspective. Lower depression severity and higher family functioning were associated with higher hrQoL ratings. Parents with affective disorders rated their children's hrQoL significantly lower than did parents with a diagnosis of substance abuse. Results show the importance of family functioning for parents' view of children's hrQoL and the influence of psychiatric symptoms on ill parents' reports. These findings are in line with previous results concerning potential psychological and behavioural problems in children of mentally ill parents. Family interventions and multi-informant assessment should be used in this high-risk group.