Health-related quality of life in a community sample of preschool-age children with and without obesity

While mothers seeking obesity treatment for preschoolers report poorer child health-related quality of life (HRQOL) than mothers of healthy-weight peers, little is known about this relationship in non-clinical preschoolers. Eighty-six mothers of 3–5-year-olds completed the parent-proxy PedsQL. HRQOL scores for children with obesity and without were compared. No significant differences were found between groups for any PedsQL subscales, nor did differences reach established minimally clinically important differences. Mothers of preschoolers with obesity from the community did not report poorer HRQOL. If parents do not view their child’s HRQOL as impacted by weight status, they may be unlikely to seek treatments.     

Differences in Child versus Parent Reports of the Child's Health-Related Quality of Life in Children with Epilepsy and Healthy Siblings

ObjectivesSelf versus proxy perspectives may produce different results that are important for clinical decision-making and for assessing outcomes in research studies. We examined differences in child versus parent report of the child's health-related quality of life (HRQOL) in a large prospective, community-based study of newly diagnosed childhood epilepsy that included children with epilepsy (case) and sibling controls.MethodsHRQOL was assessed 8 to 9 years after initial diagnosis of epilepsy in a subset of 143 case-control matched pairs using the Child Health Questionnaire (CHQ), a generic HRQOL measure with child (CHQ-CF87), and parent (CHQ-PF50) versions.ResultsThere were no significant differences between self-reported case and sibling control HRQOL scores on 9 of 11 scales or 2 global items. Nevertheless, parent ratings were significantly better (higher HRQOL) for sibling controls compared with epilepsy cases on 10 of 12 scales, global behavior and general health items, and the physical and psychosocial summary scores (P ≤ 0.05). Parent–child agreement was low for cases and controls (kappa 0.27–0.33) for three single-item questions with the same wording on parent and child versions. Parent ratings of the case's HRQOL were often significantly associated with 5-year remission status and current antiepileptic drug use, but the case's self-reported HRQOL scores were not. In contrast, current pharmacoresistance was often associated with the child and parent ratings of the child's HRQOL.ConclusionChildren with epilepsy report HRQOL that is comparable to that of sibling controls, while parents rate children with epilepsy as having lower HRQOL than sibling controls. Measuring outcomes in studies of this population should incorporate both perspectives.     

Quality of life in children and adolescents: a European public health perspective

SummaryObjectives The measurement of health-related quality of life (HRQOL) is increasingly important as a means of monitoring population health status over time, of detecting sub-groups within the general population with poor HRQOL, and of assessing the impact of public health interventions within a given population. At present, no standardised instrument exists which can be applied with equal relevance in pediatric populations in different European populations.The collaborative European KIDSCREEN project aims to develop a standardised screening instrument for children's quality of life which will be used in representative national and European health surveys. Participants of the project are centres from Austria, France, Germany, Netherlands, Spain, Switzerland, and United Kingdom. By including the instrument in health services research and health reporting, it also aims at identifying children at risk in terms of their subjective health, thereby allowing the possibility of early intervention.Methods Instrument development will be based on constructing a psychometrically sound HRQOL instrument taking into account the existing state of the art. Development will centre on literature searches, expert consultation (Delphi Methods) and focus groups with children and adolescents (8–17 years). According to international guidelines, items will be translated into the languages of the seven participating countries for a pilot test with 2100 children and their parents in Europe.The final instrument will be used in representative mail and telephone surveys of HRQOL in 1800 children and their parents per country (total n=25200) and normative data will be produced. The potential for implementing the measurement tool in health services and health reporting will also be evaluated in several different research and public health settings. The final analysis will involve national and cross cultural-analysis of the instrument.Results The international, collaborative nature of the KIDSCREEN project means it is likely to provide many challenges in terms of producing an instrument which is conceptually and linguistically appropriate for use in many different countries, but it will also provide the opportunity to develop, test and implement the first truly cross-national HRQOL instrument developed for use in children and adolescents. This will help to contribute to a better understanding of perceived health in children and adolescents and to identify populations at risk.European KIDSCREEN Group: Ulrike Ravens-Sieberer, Thomas Abel, Bärbel-Maria Bellach, Corinna Bisegger, Jeanet Bruil, Bernhard Cloetta, Symone Detmar, Wolfgang Dür, Michael Herdman, Angela Gosch, Angela Kindervater, Katy Phillips, Luis Rajmil, Ursula von Rüden, Marie-Claude Simeoni, Eric Verrips, Monika Bullinger     

Factors influencing self- and parent-reporting health-related quality of life in children with brain tumors

Purpose

Health-related quality of life (HRQOL) is not only a degree of health but also reflects patient perceptions and expectations of health. For children with brain tumors, better understanding of HRQOL requires the use of complementary reports from parents and interviewer-administered reports for children. Here, we aimed to test whether or not the trait anxiety of children and the psychological distress of their parents influence children’s and parents’ responses to HRQOL questionnaires, and whether or not the report-administration method for children influences children’s responses to HRQOL questionnaires.

Methods

One hundred and thirty-four children aged 5–18 with brain tumors and one of their parents completed the Pediatric Quality of Life Inventory^? (PedsQL^?) Brain Tumor Module questionnaires. In addition, the children also completed the State-Trait Anxiety Inventory for Children (STAIC), and the parents also completed the Kessler-10 (K10) and health and sociodemographic characteristics questionnaires. The child questionnaires were administered either by the child (self-administered) or an interviewer. Rater-dependent perceptions about HRQOL were derived from the subscales scores of the PedsQL^? Brain Tumor Module using structural equation modeling based on a multitrait-multimethod model. The STAIC trait-anxiety score, K10 score, report-administration method, and other health and sociodemographic factors related to each child’s or parent’s perceptions were identified through multiple linear regression analyses of the questionnaire responses. We used a path analysis to estimate the change in a PedsQL^? child-reported score that occurs when interviewer-administration changes the child’s perception about HRQOL.

Results

Surveys for 89 children were self-administered while those for 45 were interviewer-administered. The perceptions of the children and parents were calculated by fitting data to the model (chi-squared P = 0.087, normed fit index = 0.932, comparative fit index = 0.978, standardized root mean squared residual = 0.053, and root mean square error of approximation = 0.054). The children’s perception of HRQOL was affected by their STAIC trait-anxiety score (b = ?0.43, 95% CI [?0.60, ?0.25]). The parent’s perception was affected by their child’s treatment status (b = 0.26, 95% CI [0.09, 0.43]), the parent’s K10 score (b = ?0.21, 95% CI [?0.37, ?0.04]), and by education level (b = 0.17, 95% CI [0.00, 0.34]). The change in the child-reported PedsQL^? score in relation to the method of administration ranged from ?1.1 (95% CI: ?3.5, 1.3) on the procedural anxiety subscale to ?2.5 (95% CI: ?7.6, 2.6) on the movement and balance subscale.

Conclusion

Child-reporting of HRQOL is little influenced by the method of administration. Children’s perception about HRQOL tended to be influenced by their trait anxiety, while parents’ perception was influenced by their psychological distress, academic background, and their child’s treatment status.     

Assessment of health-related quality of life 6 years after childhood cochlear implantation

Purpose

To examine the impact of cochlear implant (CI) intervention on health-related quality of life (HRQOL) assessed by both self- and parent-reported measures.

Methods

In this national study of children implanted between ages 6 months and 5 years, HRQOL of 129 children 6-year post-CI was compared to 62 internal study (NH1) and 185 external (NH2) samples of hearing children frequency-matched to the CI group on sociodemographic variables. HRQOL ratings of children and their parents in each group, measured using the Child Health and Illness Profile-Child Edition, were compared, and their associations with the Family Stress Scale were investigated.

Results

CI children reported overall and domain-specific HRQOL that was comparable to both NH1 and NH2 peers. CI parents reported worse child scores than NH1 parents in Achievement, Resilience, and Global score (p’s < 0.01) but similar or better scores than socioeconomically comparable NH2 parents. Higher family stress was negatively associated with all parent-reported HRQOL outcomes (p’s < 0.01). Parent–child correlations in HRQOL global scores trended higher in CI recipients (r = 0.50) than NH1 (r = 0.42) and NH2 (r = 0.35) controls.

Conclusions

CI recipients report HRQOL comparable to NH peers. These results, from both child and parent perspective, lend support to the effectiveness of CI intervention in mitigating the impact of early childhood deafness. Family stress was associated with worse HRQOL, underscoring a potential therapeutic target. Parent–child agreement in HRQOL scores was higher for CI families than NH families, which may reflect higher caregiver insight and involvement related to the CI intervention.     

Whose quality of life is it anyway? Discrepancies between youth and parent health-related quality of life ratings in type 1 and type 2 diabetes

Purpose

Health-related quality of life (HRQOL) is a critical diabetes outcome, yet differences between youth and parent-proxy ratings can make interpretation difficult. This study aims to explore potential differences between self- and parent-reports of Pediatric Quality of Life Inventory (PedsQL) scores from youth with type 1 (T1D) or type 2 diabetes (T2D) and to evaluate associations between discrepancies, PedsQL scores, and glycemic control (HbA1c).

Methods

Youth and parents in the SEARCH for Diabetes in Youth Study (T1D: age 5–18, n = 3402; T2D: age 8–18, n = 353) completed the PedsQL Generic and Diabetes Modules, and youth provided a blood sample to assess HbA1c. Discrepancies (youth minus parent PedsQL ratings) were calculated and examined by age and diabetes type, and associations with youth PedsQL scores and HbA1c were evaluated.

Results

Discrepancies existed between youth and parent-proxy reports of generic and diabetes PedsQL scores in T1D and T2D (all p values < 0.01). Higher (more favorable) ratings were reported by youth except for those 5–7-years old, where parents’ scores were higher. When parent-proxy scores were higher, discrepancies were largest when the child reported low PedsQL scores. Higher HbA1c was associated with larger discrepancies (youth scores higher) for adolescents with T1D.

Conclusions

Discrepant PedsQL ratings suggest that parents may often underestimate youths’ HRQOL except in the youngest children. Although examining both reports is optimal, the youth report should be prioritized, particularly for young children with T1D and for adolescents with either T1D or T2D.

     

Quality of life of children and adolescents with clinical obesity,perspectives of children and parents

Background/objectivesChildhood obesity can have important psychological impacts. The objective of this study was to evaluate the Health Related Quality of Life (HRQoL) of children and adolescents with overweight and obesity. The participants were referred to an outpatient hospital-based obesity treatment. Additionally, we investigated the differences between parent- and self-reported HRQoL.Subjects/methodsChildren and adolescents aged 3−18 years with overweight or obesity, referred by their general practitioner or youth health care physician to the pediatric outpatient clinic of Hospital Gelderse Vallei (Ede, the Netherlands) for multidisciplinary obesity treatment, were enrolled in this cross-sectional study (n = 119).Interventions/methodsParent-proxy reported HRQoL was assessed using the Child Health Questionnaire Parental Form 50 (CHQ-PF50, n = 119) and the Infant Toddler Quality of Life Questionnaire 97 (ITQOL-97). Adolescents completed CHQ Child Form 87 (CHQ-CF87, n = 45) and Impact of Weight on Quality of Life-Kids (IWQOL-Kids, n = 38) to assess self-reported HRQoL.ResultsThe mean age of the children was 9.6 years (SD 4.3). Both parent-proxy reports and child self-reports showed lower HRQoL in children with a higher degree of obesity, especially in the physical domains of HRQoL (p < 0.05). Child self-reported scores were significantly lower than parent-proxy scores on the subscales ‘bodily pain/discomfort’ and ‘general health perceptions’, and significantly higher on ‘behavior’ and ‘family cohesion’ (p < 0.05).ConclusionsChildhood obesity has a negative effect on HRQoL, especially on the physical aspects. The discordance between parent and child reports underscores the importance of using a combination of parent-proxy and child self-reports to assess HRQoL.     

How well do parents know their children? implications for proxy reporting of child health-related quality of life

OBJECTIVES: This study examined parental knowledge of their children's oral-health-related quality of life (OHRQoL) (Objective 1), and the effects of different analytical techniques to manage 'Don't know' (DK) responses on the validity and reliability of the questionnaire (Objective 2) and the level of agreement between parental and child reports (Objective 3). METHODS: The parental (PPQ) and child (CPQ11-14) components of the Child Oral Health Quality of Life Questionnaire were used. Objectives 1 and 2 were addressed in the study that involved 221 parents and Objective 3 in the study that involved 63 pairs of parents and children. Four methods for treating DK responses in the PPQ were tested: listwise deletion, item mean imputation, imputation of the value zero and adjustment of scores to account for items with DK responses. RESULTS: Respectively, 26 and 11% of the parents gave > or = 3 and 6 > or = DK responses to 33 items comprising the PPQ. DK responses were associated with child's age and clinical condition, and parental gender. The methods of managing DK responses did not have differing effects on the measurement properties of the PPQ and the level of agreement between parents and children. CONCLUSION: Some parents have limited knowledge concerning their children's OHRQoL. However, given that parental and child reports are measuring different realities, information provided by parents is useful even if it is incomplete.     

反复呼吸道感染儿童生存质量及影响因素研究

目的 探讨反复呼吸道感染(recurrent respiratory tract infection,RRTI)对患儿及其家长健康相关生存质量的影响,为提高患儿及其家长生存质量提供参考。 方法 采用PedsQL^TM 4.0生存质量量表中文版,对728例2~7岁儿童及其家长进行调查。比较RRTI患儿及其家长与健康儿童及其家长的生存质量得分的差异,分析儿童自答问卷和家长代答问卷生存质量得分的一致性,并对患儿生存质量影响因素进行分析。 结果 RRTI患儿的生存质量各维度得分及总分均低于同龄健康儿童(P<0.05)。患儿家庭影响各维度得分及总分均低于同龄健康儿童家庭相应维度得分(P<0.05),家庭影响各维度得分与患儿生存质量得分呈正相关(P<0.05)。RRTI儿童自答问卷的生理功能、社交功能及总得分高于家长代答问卷得分(P<0.05)。多因素分析结果显示,患儿年龄、家长与患儿间的社会关系和家长文化程度与患儿生存质量得分有相关性(P<0.05)。 结论 RRTI对患儿生存质量及其家庭均存在一定危害,家长的社会学特征对患儿的生存质量有一定影响。     

Agreement was not found in adolescents' quality of life rated by parents and adolescents

ObjectiveLimited evidence examines agreement between the ratings of adolescents' health-related quality of life (HRQOL) by parents and adolescents especially accounting for measurement properties. This study aimed to test whether agreement exists between the dyads using a methodology of measurement invariance.Study Design and SettingWe conducted a telephone survey to collect data from parents and their adolescents enrolled in Florida's Children's Medical Services (376 pairs) using the PedsQL 4.0. We used multi-group confirmatory factor analysis to test measurement invariance, including configural (equivalent HRQOL construct), metric (equivalent item–domain associations), scalar (equivalent starting value of ratings), and residual (equivalent nonsystematic measurement errors of ratings) invariance. We also investigated correlates of discrepancies in the dyadic ratings.ResultsThere were equivalent HRQOL constructs and item–domain associations between the dyads. However, some items show different starting values and nonsystematic errors in the dyadic ratings. After adjusting for noninvariant items, adolescents reported significant higher HRQOL scores than parents in all domains (P < 0.05). Parents' rating of adolescents' health significantly contributed to discrepancies in the dyadic ratings (P < 0.05).ConclusionsAdolescents rated HRQOL higher than their parents. This discrepancy was associated with severe health conditions. Without assuring measurement invariance, comparisons of the dyadic HRQOL ratings can be misleading.     

Evaluating the Serbian version of the KIDSCREEN quality-of-life questionnaires: reliability, validity, and agreement between children’s and parents’ ratings

Purpose

To evaluate the psychometric properties of the Serbian set of the KIDSCREEN questionnaires: KIDSCREEN-52, KIDSCREEN-27, and KIDSCREEN-10 index.

Methods

The study included 330 children (8–18 years) and 314 parents. All completed the KIDSCREEN and KINDL questionnaires. Psychometric analyses included internal consistency reliability (Cronbach’s coefficient), criterion, convergent and discriminant validity, and agreement between children and parents (the intraclass correlation coefficient—ICC).

Results

Cronbach’s α of 0.7 and above was found for all except for the self-perception scale of the KIDSCREEN-52, being 0.58 for the child and 0.63 for the parent version. Correlations between similar scales in the KIDSCREEN and KINDL were substantial (ranging 0.45–65) and higher than correlations between theoretically different scales. Moderate to excellent agreement existed between children’s and parents’ ratings in all KIDSCREEN scales (ICC ranged 0.44–0.63), except for the moods and emotions from the longer (ICC = 0.34) and the social support and peers from the shorter version (ICC = 0.38).

Conclusions

Levels of internal consistency reliability and validity of all KIDSCREEN questionnaires in Serbian are appropriate, as well as agreement between children’s and parents’ ratings.     

Health-related quality of life and children's happiness with their childcare

Background Almost without exception, research into the range and quality of childcare provision, and its correlates with children's development, comes from the perspective of adults. Parents, childcare workers, teachers and the general public have all been asked for their views on childcare. In contrast, there is a dearth of information on attitudes to childcare provision and its correlates from the perspective of the children themselves. Methods A total of 3657 Primary 7 children, who are 10 or 11 years of age, completed the KIDSCREEN‐27 health‐related quality of life (HRQoL) measure along with questions on their childcare provision as part of an online survey carried out in schools. Results Most children receiving childcare from people other than their parents were completely happy with their care. Childcare was related to poorer HRQoL for girls on four of the five KIDSCREEN domains, although the effect sizes were small. For both boys and girls, there were statistically significant, although modest, correlations between happiness with childcare and scores on all five domains of the KIDSCREEN‐27. Conclusions Overall, the findings suggest that most children are happy with their care and that any differences between the HRQoL of those who are cared for by their parents and those who are not are small to moderate.     

Health-Related Quality of Life in Adolescents With Chronic Illness in Jamaica: Adolescent and Parent Reports

PurposeThe aim of this study is to assess the level of agreement between adolescents’ self-assessment and parent-proxy reports on health-related quality of life (HRQOL) in Jamaican adolescents with chronic illness.MethodsA cross-sectional study was conducted, recruiting adolescents living with a chronic illness (ALCIs)—asthma, human immunodeficiency virus, insulin-dependent diabetes mellitus, or sickle cell disease and age/sex-matched healthy adolescents. Data were collected on HRQOL from adolescents and parents using the Pediatric Quality of Life Scale. Parent-adolescent agreement was determined at group level (Wilcoxon signed-rank test) and individual level (intraclass correlation coefficient).ResultsTwo hundred twenty-six (226) parent/adolescent pairs participated: 130 ALCIs and 96 healthy peers; mean age 14.9 ± 2.8 years; 58% females. Adolescents with and without chronic illness reported similar HRQOL; parent-proxies reported better HRQOL for healthy adolescents compared to ALCIs. Intraclass correlation demonstrated higher levels of parent-adolescent correlation for ALCIs than healthy adolescents (ALCIs: 0.11–0.34; healthy adolescents: 0.01–0.10). At group level, analyses demonstrated better parent-proxy rating of QOL in all of the scores with the exception of the general health score. Parent-proxies overestimated QOL for asthma and insulin-dependent diabetes mellitus but not for sickle cell disease and human immunodeficiency virus. Linear regression modeling revealed that female sex and living with chronic illness were significant predictors of agreement.DiscussionParent-proxies overestimated adolescents’ QOL compared to adolescents’ report regardless of whether the adolescent was living with a chronic illness or not. As such, health care providers should elicit feedback from the adolescent wherever possible and proxy reports should be used as complementary information rather than primary source.     

Socioeconomic determinants of health related quality of life in childhood and adolescence: results from a European study

STUDY OBJECTIVE: The objective of this study was to investigate the impact of two different socioeconomic status (SES) measures on child and adolescent self reported health related quality of life (HRQoL). The European KIDSCREEN project aims at simultaneous developing, testing, and implementing a generic HRQoL instrument. DESIGN AND SETTING: The pilot version of the questionnaire was applied in school surveys to students from 8 to 18 years of age, as well as to their parents, together with such determinants of health status as two SES indicators, the parental educational status and the number of material goods in the family (FAS, family affluence scale). PARTICIPANTS: Students from seven European countries: 754 children (39.8%; mean: 9.8 years), and 1142 adolescents (60.2 %; mean: 14.1 years), as well as their respective parents. MAIN RESULTS: In children, a higher parental educational status was found to have a significant positive impact on the KIDSCREEN dimensions: physical wellbeing, psychological wellbeing, moods and emotions, bullying and perceived financial resources. Increased risk of low HRQoL was detected for adolescents in connection with their physical wellbeing. Family wealth plays a part for children's physical wellbeing, parent relations and home life, and perceived financial resources. For adolescents, family wealth furthermore predicts HRQoL on all KIDSCREEN dimensions. CONCLUSIONS: There is evidence to suggest that exposure to low parental educational status may result in a decreased HRQoL in childhood, whereas reduced access to material (and thereby social) resources may lead to a lower HRQoL especially in adolescence.     

情绪障碍儿童的父母养育方式特征

目的 探讨情绪障碍儿童的父母养育方式特征,为情绪障碍儿童心理干预提供具体方向。方法 采用自编一般情况调查表、父母养育方式问卷对70例情绪障碍儿童及其父母和140例正常儿童及其父母进行施测。结果 两组父、母情感温暖理解、父亲偏爱被试、父亲拒绝否认因子分差异有统计学意义(P<0.05)。两组父亲情感温暖理解(19个条目)、父亲偏爱被试(3个条目)、父亲拒绝否认(1个条目)、母亲情感温暖理解(17个条目)差异有统计学意义(P<0.05)。情绪障碍组父、母部分养育因子之间存在相关性(P均<0.05)。结论 情绪障碍儿童的父母养育方式主要呈现为父母低情感温暖,高拒绝否认的特征,且具有消极互动等特点。具体体现在患儿感受不到父母的认同、宠爱、鼓励与支持等方面。     

Health-related quality of life of school- age children with rheumatic Fever

Background: Rheumatic fever (RF) is a major public health problem and it is an important cause of acquired cardiovascular disease in childhood and adolescence. The goal of effective management of rheumatic fever is to allow children with RF to function with minimal restrictions and enjoy a good quality of life(QOL) throughout their lives. The aim of this study was to identify the health-related quality of life of school- age children with rheumatic fever. Materials and Methods: A convenient sample of 100 school-age children with rheumatic fever and their mothers were selected from outpatient clinic and inpatient pediatric cardiac departments of EL-Shatby Children University Hospital, Alexandria, Egypt. Data was collected from children in the previously mentioned settings who fulfil the following criteria, the children's age ranged from 8 to 12 years & free from any associated disease. Two tools were used in Clinical Data of Rheumatic School-Age Children Questionnaire that was developed by the researcher and Pediatric Quality of Life Inventory scale (Peds QL). Results: The majority (78.3%) of school-age children with rheumatic fever had a neutral HRQOL and less than a quarter of them had high HRQOL. Only small percent (8.7%) of studied subjects had poor HRQOL. Children's parents' reports confirmed such results, where there were a significant positive correlations between children reports and their parents reports in the majority of studied items of HRQOL regarding rheumatic fever. Conclusion and Recommendations: Health education program for school-age children who had rheumatic fever and their parents towards the different measures of high HRQOL is recommended to help those children to improve their quality of life.     

Cancer-specific health-related quality of life in children with brain tumors

Purpose

To understand the influence of disease and treatment on the health-related quality of life (HRQOL) of children with brain tumors, compared to the HRQOL of children with other cancers, from the viewpoints of children and parents.

Methods

A total of 133 children aged 5–18 years and 165 parents of children aged 2–18 completed questionnaires of the Pediatric Quality of Life Inventory Cancer Module (Pain and Hurt, Nausea, Procedural Anxiety, Treatment Anxiety, Worry, Cognitive Problems, Perceived Physical Appearance, and Communication scales); higher scores indicate a better HRQOL. The Cancer Module scores, weighted by age and treatment status, were compared to those obtained in a previous study of children with other cancers (mostly leukemia).

Results

The weighted mean scores for Pain and Hurt (effect size d = 0.26) and Nausea (d = 0.23) from child reports and the scores for Nausea (d = 0.28) from parent reports were higher for children with brain tumors than scores for children with other cancers. The scores for Procedural Anxiety (d = ?0.22) and Treatment Anxiety (d = ?0.32) from parent reports were lower for parents of children with brain tumors than the scores for parents of children with other cancers. The child-reported Pain and Hurt score of the Cancer Module was higher (d = 0.29) and in less agreement (intraclass correlation coefficient = 0.43) with scores from the Brain Tumor Module, indicating that assessments completed with the Cancer Module misesteem pain and hurt problems in children with brain tumors.

Conclusions

The profiles of cancer-specific HRQOL in children with brain tumors differ from those of children with other cancers; we therefore suggest that these children receive specific psychological support.     

Changes in health-related quality of life (HRQoL) in a population-based sample of children and adolescents after 3 years of follow-up

Objectives  To assess changes in health-related quality of life (HRQoL) in children and adolescents over a 3-year period and to examine factors associated with change. Methods  A representative sample of Spanish children and adolescents aged 8–18 years and their parents completed the KIDSCREEN-52 questionnaire at baseline and again after 3 years. Data were also collected on gender, pubertal development (PD), and family socio-economic status (SES). Change in HRQOL over time was evaluated using effect sizes (ES). Generalized estimating equations (GEE) were used to analyze associations among changes in KIDSCREEN scores, socio-demographic factors, and pubertal development. Results  Response rate at follow-up was 54% (n = 454). Overall, HRQoL worsened in eight out of the ten KIDSCREEN dimensions, with ES ranging from −0.10 (Moods and Emotions) to −0.34 (Psychological Well-being). The decrease was most marked in the intermediate age group (13–17 years of age at follow-up) and in girls. In the GEE models, pubertal development more strongly impacted changes in girls than in boys. Conclusions  In this representative, population-based sample of children and adolescents, moderate decrements in HRQoL were observed after 3 years. Changes were particularly important among girls and in relation to pubertal development. These results could provide useful reference data for other longitudinal studies in population sub-groups.     

Parent–child agreement across child health-related quality of life instruments: a review of the literature

AIM: To systematically review the literature published since 1999 on paediatric health-related quality of life (HRQL) in relation to parent-child agreement. METHODS: Literature searches used to identify studies which evaluated parent-child agreement for child HRQL measures. RESULTS: Nineteen studies were identified, including four HRQL instruments. The Pediatric Quality of Life Inventory (PedsQL) was most commonly used. Differences in parent-child agreement were noted between domains for different measures. The impact of child and parent characteristics were not consistently considered; however parents of children in a nonclinical sample tended to report higher child HRQL scores than children themselves, while parents of children with health conditions tended to underestimate child HRQL. CONCLUSION: Despite increasing numbers of studies considering children's HRQL, information about variables contributing to parent-child agreement levels remains limited. Authors need to consistently provide evidence for reliability and validity of measures, and design studies to systematically investigate variables that impact on levels of parent-child agreement.     

Rasch Measurement Properties of the KIDSCREEN Quality of Life Instrument in Children with Cerebral Palsy and Differential Item Functioning between Children with and without Cerebral Palsy

Objective:  To assess if the Rasch-scaled KIDSCREEN-52 generic health-related quality of life measure was valid in children with cerebral palsy (CP).
Methods:  The Rasch measurement properties and differential item functioning (DIF) of the KIDSCREEN-52 were examined in children with CP. Data were available from the KIDSCREEN project from 3219 children aged 8 to 12 years and 2126 parents in the general population; and from the SPARCLE project from 501 children aged 8 to 12 years with CP and 823 parents. Analysis used Zumbo's logistic regression DIF approach. Partial credit model analyses were conducted.
Results:  All items of the KIDSCREEN self-report version fitted the partial credit model (smallest P -value: 0.256). Only one item of the parent version did not fit the data well (smallest P -value 0.001). Statistically significant DIF was observed in some items, but was of substantial magnitude (Δ R ² = 0.046, 0.049) for only two items in two dimensions of the parent version. The practical impact of DIF was small. DIF-adjusted standardized mean differences between children with and without CP being 1.07 and 0.34 for the physical and school dimensions, respectively (unadjusted: 1.09 and 0.16).
Conclusion:  The KIDSCREEN-52 functions in a similar way in children with CP and in the general population. Comparisons of quality of life between such children are therefore likely to be valid.