Ulrike Ravens-Sieberer

Self-reported quality of life of 8–12-year-old children with cerebral palsy: a cross-sectional European study

BACKGROUND Little is known about the quality of life (QoL) of disabled children. We describe self-reported QoL of children with cerebral palsy, factors that influence it, and how it compares with QoL of the general population. METHODS 1174 children aged 8-12 years were randomly selected from eight population-based registers of children with cerebral palsy in six European countries and 743 (63%) agreed to participate; one further region recruited 75 children from multiple sources. Researchers visited these 818 children. 318 (39%) with severe intellectual impairment could not self-report; 500 (61%) reported their QoL using KIDSCREEN, an instrument with scores in ten domains, each with SD=10. Multivariable regression was used to relate QoL to impairments, pain, and sociodemographic characteristics. Comparisons were made with QoL data from the general population. FINDINGS Impairments were not significantly associated with six KIDSCREEN domains. Comparison of least and most able groups showed that severely limited self-mobility was significantly associated with reduced mean score for physical wellbeing (7.6, 95% CI 2.7-12.4); intellectual impairment with reduced mean for moods and emotions (3.7, 1.5-5.9) and autonomy (3.3, 0.9-5.7); and speech difficulties with reduced mean for relationships with parents (4.5, 1.9-7.1). Pain was common and associated with lower QoL on all domains. Impairments and pain explained up to 3% and 7%, respectively, of variation in QoL. Children with cerebral palsy had similar QoL to children in the general population in all domains except schooling, in which evidence was equivocal, and physical wellbeing, in which comparison was not possible. INTERPRETATION Parents can be reassured that most children aged 8-12 years with cerebral palsy will have similar QoL to other children. This finding should guide social and educational policy to ensure that disabled children participate fully in society. Because of its association with QoL, childrens pain should be carefully assessed.

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.

Generic Health-Related Quality-of-Life Assessment in Children and Adolescents

The health-related quality of life (HR-QOL) of children and adolescents is increasingly considered a relevant topic for research. Instruments to assess quality of life in children and adolescents of a generic as well as disease- or condition-specific nature are being developed and applied in epidemiological surveys, clinical studies, quality assurance and health economics. This paper attempts to give an overview on the state of the art of HR-QOL assessment in children as it relates to methodological and conceptual challenges. Instruments available in international or cross-cultural research to assess HR-QOL in generic terms were identified and described according to psychometric data provided and the width of application.In an initial literature search, several challenges in the assessment of child and adolescent HR-QOL were identified, ranging from conceptual and methodological to practical aspects. Seven specific major issues were considered: (i) What are the dimensions of HR-QOL relevant for children and adolescents, and do suitable instruments for their measurement exist? (ii) Can these dimensions be collected in a cross-culturally comparable way? (iii) What advantages and disadvantages do self-rated versus externally evaluated HR-QOL measurements of children and adolescents have? (iv) How can HR-QOL be assessed in an age-appropriate way? (v) What are the advantages and disadvantages of disease-specific and generic data collection? (vi) What advantages and disadvantages do profile and index instruments have? (vii) How can HR-QOL be connected with utility- preference values? In a second literature search we identified nine generic HR-QOL instruments and four utility health state classification systems that complied with the prespecified inclusion criteria.It was concluded that (i) HR-QOL instruments are available to assess the dimensions of the construct relevant to children and adolescents; (ii) provided that an instrument was constructed in an appropriate way, the dimensions of HR-QOL can be measured in an interculturally comparable manner; (iii) the HR-QOL of children and adolescents can and should be ascertained by self-rating; (iv) the measurement instruments used have to consider maturity and cognitive development; (v) only generic quality-of-life instruments allow for an assessment of HRQOL in both healthy and chronically ill children and adolescents; (vi) the representation of HR-QOL achieved through a singular index value is connected to strict psychometric conditions: the index instrument has to be tailored to these psychometric conditions; (vii) how far utility measures are employable with children and adolescents has to be investigated in further studies.The problem aspects identified indicate the necessity for further research. Nevertheless, instruments for assessing the HR-QOL of children and adolescents can be identified that meet the requirements mentioned above.

Development of the EQ-5D-Y: a child-friendly version of the EQ-5D

PurposeTo develop a self-report version of the EQ-5D for younger respondents, named the EQ-5D-Y (Youth); to test its comprehensibility for children and adolescents and to compare results obtained using the standard adult EQ-5D and the EQ-5D-Y.MethodsAn international task force revised the content of EQ-5D and wording to ensure relevance and clarity for young respondents. Children’s and adolescents’ understanding of the EQ-5D-Y was tested in cognitive interviews after the instrument was translated into German, Italian, Spanish and Swedish. Differences between the EQ-5D and the EQ-5D-Y regarding frequencies of reported problems were investigated in Germany, Spain and South Africa.ResultsThe content of the EQ-5D dimensions proved to be appropriate for the measurement of HRQOL in young respondents. The wording of the questionnaire had to be adapted which led to small changes in the meaning of some items and answer options. The adapted EQ-5D-Y was satisfactorily understood by children and adolescents in different countries. It was better accepted and proved more feasible than the EQ-5D. The administration of the EQ-5D and of the EQ-5D-Y causes differences in frequencies of reported problems.ConclusionsThe newly developed EQ-5D-Y is a useful tool to measure HRQOL in young people in an age-appropriate manner.

Prevalence of mental health problems among children and adolescents in Germany: results of the BELLA study within the National Health Interview and Examination Survey.

BackgroundOver the past decades the public health relevance of mental health conditions in children and adolescents has been of growing concern. However, so far no detailed epidemiological data has been available for a representative national sample in Germany.ObjectivesThe present paper reports prevalence rates of general and specific mental health problems among children and adolescents in Germany and describes the link between symptoms and impairment as well as the treatment situation.MethodsThe mental health module (BELLA study) examines mental health problems in a representative sub-sample of 2,863 families with children aged 7–17 from the National Health Interview and Examination Survey among Children and Adolescents (KiGGS). Mental health problems were determined using the extended version of the strengths and difficulties questionnaire (SDQ). Further standardised screening measures were employed to screen for anxiety disorders (SCARED), conduct disorder (CBCL), attention deficit-/hyperactivity disorder (FBB-HKS, Conners’ Scale) and depressive disorders (CES-DC). Furthermore, substance abuse and suicidal tendencies were assessed. Health-related quality of life (HRQoL) and health care use were determined.ResultsOverall, 14.5% of the children and adolescents aged 7–17 fulfilled the criteria for at least one specific mental health problem associated with impairment, or had an overall mental health problem indicated by an abnormal SDQ score and present impairment. However, high comorbidity was found in the children concerned. Symptoms of overall mental health problems were present in 8.6% of the children and 6.6% of the adolescents. This number was reduced to prevalence rates of 6.3 and 4.9% when additional impairment was taken as a criterion. Irrespective of the type of disorder, fewer than half of the children affected were reported as receiving treatment. However, for those suffering from mental health problems, large impairments in HRQoL were observed.ConclusionsThe observed prevalence of mental health problems as well as their large impact on well-being and functioning calls for early prevention. This is especially important with regard to the large decrease in HRQoL in the children and adolescents affected.

Being bullied: Associated factors in children and adolescents 8 to 18 years old in 11 European countries

OBJECTIVES. To analyze the prevalence of bullying victims among children and adolescents aged 8 to 18 years in 11 European countries and to investigate the associated sociodemographic, physical, and psychosocial factors. METHODS. Being a bullying victim was measured by using the social acceptance (bullying) scale from the Kidscreen-52, a health-related quality-of-life questionnaire administered to 16 210 children and adolescents aged 8 to 18 and their parents in postal or school-based surveys in 11 European countries. Standardized mean differences (effect size) were computed to measure the percentage of children/adolescents scoring 1 SD below the mean on the Kidscreen bullying scale. Logistic regression models were used to determine which sociodemographic, physical, and psychosocial factors were associated with being bullied. RESULTS. The percentage of children being bullied was 20.6% for the entire sample, ranging from 10.5% in Hungary to 29.6% in the United Kingdom. In almost all countries the factors most strongly associated with being bullied were younger age, having probable mental health problems, having a low score on the Kidscreen-52 moods and emotions dimensions, and poor social support. Using the grand mean for all countries as the reference category, there was an above-average likelihood of children or adolescents reporting that they had been victims of bullying in 5 countries (Austria, Netherlands, Spain, Switzerland, and the United Kingdom), and a below-average likelihood in 3 countries (France, Greece, Hungary). CONCLUSIONS. This study indicated considerable variation between countries in the prevalence of those perceiving themselves to be victims of bullying but also revealed a clear profile of those likely to be bullied. The study also suggests that the Kidscreen bullying scale could be useful in identifying potential bullying victims.

Psychometric properties of the quality of life questionnaire for children with CP

This paper describes the development and psychometric properties of a condition‐specific quality of life instrument for children with cerebral palsy (CP QOL‐Child). A sample of 205 primary caregivers of children with CP aged 4 to 12 years (mean 8y 5mo) and 53 children aged 9 to 12 years completed the CP QOL‐Child. The children (112 males, 93 females) were sampled across Gross Motor Function Classification System (GMFCS) levels (Level I=18%, II=28%, III=14%, IV=11%, V=27%). Primary caregivers also completed other measures of child health (Child Health Questionnaire; CHQ), QOL (KIDSCREEN), and functioning (GMFCS). Internal consistency ranged from 0.74 to 0.92 for primary caregivers and from 0.80 to 0.90 for child self‐report. For primary caregivers, 2‐week test‐retest reliability ranged from 0.76 to 0.89. The validity of the CP QOL is supported by the pattern of correlations between CP QOL‐Child scales with the CHQ, KIDSCREEN, and GMFCS. Preliminary statistics suggest that the child self‐report questionnaire has acceptable psychometric properties. The questionnaire can be freely accessed at http://www.deakin.edu.ac/hmnbs/chase/cerebralpalsy/cp_qol_home.php

The European KIDSCREEN approach to measure quality of life and well-being in children: development, current application, and future advances.

PurposeThe KIDSCREEN questionnaires were developed by a collaborative effort of European pediatric researchers for use in epidemiologic public health surveys, clinical intervention studies, and research projects. The article gives an overview of the development of the tool, summarizes its extensive applications in Europe, and describes the development of a new computerized adaptive test (KIDS-CAT) based on KIDSCREEN experiences.MethodsThe KIDSCREEN versions (self-report and proxy versions with 52, 27, and 10 items) were simultaneously developed in 13 different European countries to warrant cross-cultural applicability, using methods based on classical test theory (CTT: descriptive statistics, CFA and MAP, internal consistency, retest reliability measures) and item response theory (IRT: Rasch modeling, DIF analyses, etc.). The KIDS-CAT was developed (in cooperation with the US pediatric PROMIS project) based on archival data of European KIDSCREEN health surveys using IRT more extensively (IRC).ResultsResearch has shown that the KIDSCREEN is a reliable, valid, sensitive, and conceptually/linguistically appropriate QoL measure in 38 countries/languages by now. European and national norm data are available. New insights from KIDSCREEN studies stimulate pediatric health care. Based on KIDSCREEN, the Kids-CAT promises to facilitate a very efficient, precise, as well as reliable and valid assessment of QoL.ConclusionsThe KIDSCREEN has standardized QoL measurement in Europe in children as a valid and cross-cultural comparable tool. The Kids-CAT has the potential to further advance pediatric health measurement and care via Internet application.

Subjective health, symptom load and quality of life of children and adolescents in Europe.

Objectives:To examine cross-cultural differences in the prevalence of school childrens subjective health types and the pattern of socio-demographic and socio-economic differences.Methods:Within the cross-sectional Health Behaviour in Schoolaged Children 2005/2006 Survey 200,000 school children aged 11, 13 and 15 answered a general health item, the Cantrill life satisfaction ladder and a subjective health complaints checklist. ANOVA and multilevel logistic regression models were conducted.Results:Overall, 44% of the respondents reported multiple recurrent health complaints, only poor to fair general health, low life satisfaction or a combination of these. Older adolescents (OR: 1.1–1.6) and girls (OR: 1.2–1.4) reported more health problems, the gender difference increased with age (OR: 1.3–1.6). Low socio-economic status was also associated with health problems (OR: 1.4–2.3). Sizeable cross-national variation in the prevalence of health types and the impact of the above mentioned factors were observed, yet the main pattern of impact could be confirmed cross-culturally.Conclusions:Increasing social and gender role pressure with growing age, as well as restricted access to material resources and psychosocial strains are discussed as potential explanations for the observed health inequalities.

Psychometric properties of the KINDL-R questionnaire: results of the BELLA study

BackgroundThe concept of health-related quality of life (HRQoL) involves the respondents’ perception of well-being and functioning in physical, emotional, mental, social, and everyday life areas. Research in the area of subjective health has resulted in the development of a multitude of HRQoL instruments that meet satisfying psychometric standards with regard to reliability, validity, and sensitivity of the scales. One frequently used generic measure for children and adolescents is the KINDL-R questionnaire developed by Ravens-Sieberer and Bullinger (Qual Life Res 7:399–407, 1998).MethodsWithin the representative sample of the BELLA study, analyses regarding psychometric properties (namely reliability as well as discriminant and construct validity) are performed.ResultsPsychometric testing of the KINDL-R questionnaire reveals good scale utilisation and scale fit as well as moderate internal consistency. Correlations with the KIDSCREEN-52 subscales are shown. Differences in KINDL-R scores exist between chronically ill and healthy children as well as between SDQ problem scores.ConclusionThe KINDL-R is a suitable instrument for measuring HRQoL in children and adolescents through self-report. The testing of the instrument in a representative sample of German children and adolescents as well as their parents provides reference values extending the potential of the KINDL-R questionnaire.