Chronic health conditions and school experience in school-aged children in 19 European countries.

This study investigates chronic conditions (CC) prevalence among children in mainstream schools, their school experience and life satisfaction in Europe. Data were collected from the 2017/2018 HBSC survey, a cross-national study using self-reported questionnaires administered in classrooms. Nationally representative samples of children aged 11, 13, and 15 years in mainstream schools from 19 European countries (n = 104,812) were used. School experience was assessed using four variables: low school satisfaction, schoolwork pressure, low teacher support, and peer-victimization, which were related to life satisfaction. Latent class analysis (LCA) was conducted to identify patterns of school experience among students with CC. The prevalence of CC varied from 8.4 (Armenia) to 28.2% (Finland). Children with CC (n = 17,514) rated their school experience and life satisfaction lower than children without CC. LCA identified three school experience patterns: "negative on all items" (37%), "negative on all items, except school pressure" (40%) and "overall positive" (23%). The distribution of subgroups varied across countries-in countries with a higher proportion of children with CC in mainstream schools, children reported more negative school experiences. Compared to the "overall positive" group, low life satisfaction was highest for students classified as "negative on all items" (relative risk (RR) = 2.9; 95% CI 2.2-3.8) with a lesser effect for "negative on all items, except school pressure" (RR) = 1.8; 95% CI 1.4-2.4). These findings provide cross-national data documenting the diversity in inclusive educational practices regarding school placement and school experiences, and suggest that efforts are still needed to allow a fully inclusive environment.

From questionnaire to practical application: A quality of life profile for populations with diverse disabilities.

AIMS: Existing quality of life questionnaires are either disease specific or generic in their assessment of themes which are perceived important to the quality of life in populations with disabilities. To be able to improve quality of life in a population with diverse disabilities there was a need for a cross-disability instrument. The Electronic Quality of Life (EQOL)-questionnaire was developed to meet this need. It is crucial that such an instrument is validated, easy to use, and interpret by, for example, clinicians and policy planners. This study aims to test the content validity of the EQOL questionnaire and to construct a user-friendly, cross-disability quality of life profile. METHODS: To further test the content validity of the EQOL-questionnaire, we conducted field test analyses on 318 individuals (aged 16-64) with self-reported disabilities. Comments on the questionnaire were scrutinised and sorted. A profile with six domains of quality of life was developed. Model fit was evaluated by confirmatory factor analysis and content validity was evaluated based on distributions. RESULTS: The EQOL-questionnaire was found to have an acceptable content validity and respondents from the field test found that it features important themes of quality of life. The confirmatory factor analysis estimated a satisfying model fit by the root-mean-squared error of approximation (0.06), whereas the comparative fit index and goodness of fit index indicated poorer model fit. Graphical charts, with colour categories for user-friendly interpretation, were constructed. CONCLUSION: By identifying themes reported as problematic, the EQOL-profile can be used to inform and target interventions aiming to improve quality of life in populations with diverse disabilities.

Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis.

BACKGROUND: Children with cerebral palsy who can self-report have similar quality of life (QoL) to their able-bodied peers. Is this similarity also found in adolescence? We examined how self-reported QoL of adolescents with cerebral palsy varies with impairment and compares with the general population, and how factors in childhood predict adolescent QoL. METHODS: We report QoL outcomes in a longitudinal follow-up and cross-sectional analysis of individuals included in the SPARCLE1 (childhood) and SPARCLE2 (adolescent) studies. In 2004 (SPARCLE1), a cohort of 818 children aged 8-12 years were randomly selected from population-based cerebral palsy registers in nine European regions. We gathered data from 500 participants about QoL with KIDSCREEN (ten domains); frequency of pain; child psychological problems (Strengths and Difficulties Questionnaire); and parenting stress (Parenting Stress Index). At follow-up in 2009 (SPARCLE2), 355 (71%) adolescents aged 13-17 years remained in the study and self-reported QoL (longitudinal sample). 76 additional adolescents self-reported QoL in 2009, providing data for 431 adolescents in the cross-sectional sample. Researchers gathered data at home visits. We compared QoL against matched controls in the general population. We used multivariable regression to relate QoL of adolescents with cerebral palsy to impairments (cross-sectional analysis) and to childhood QoL, pain, psychological problems, and parenting stress (longitudinal analysis). FINDINGS: Severity of impairment was significantly associated (p<0·01) with reduced adolescent QoL on only three domains (Moods and emotions, Autonomy, and Social support and peers); average differences in QoL between the least and most able groups were generally less than 0·5 SD. Adolescents with cerebral palsy had significantly lower QoL than did those in the general population in only one domain (Social support and peers; mean difference -2·7 [0·25 SD], 95% CI -4·3 to -1·4). Pain in childhood or adolescence was strongly associated with low adolescent QoL on eight domains. Childhood QoL was a consistent predictor of adolescent QoL. Child psychological problems and parenting stress in childhood or their worsening between childhood and adolescence predicted only small reductions in adolescent QoL. INTERPRETATION: Individual and societal attitudes should be affected by the similarity of the QoL of adolescents with and without cerebral palsy. Adolescents with cerebral palsy need particular help to maintain and develop peer relationships. Interventions in childhood to alleviate psychological difficulties, parenting stress, and especially pain, are justified for their intrinsic value and for their longer term effect on adolescent QoL. FUNDING: SPARCLE1 was funded by the European Union Research Framework 5 Program (grant number QLG5-CT-2002-00636), the German Ministry of Health GRR-58640-2/14, and the German Foundation for the Disabled Child. SPARCLE2 was funded by: Wellcome Trust WT086315 A1A (UK and Ireland); Medical Faculty of the University of Lübeck E40-2009 and E26-2010 (Germany); CNSA, INSERM, MiRe-DREES, and IRESP (France); Ludvig and Sara Elsass Foundation, The Spastics Society and Vanforefonden (Denmark); Cooperativa Sociale "Gli Anni in Tasca" and Fondazione Carivit, Viterbo (Italy); Göteborg University-Riksforbundet for Rorelsehindrade Barn och Ungdomar and the Folke Bernadotte Foundation (Sweden).

Parental social consequences of having a child with cerebral palsy in Denmark.

AIM: To analyse the social situation of parents who have a child with cerebral palsy (CP). METHOD: This was a population-based longitudinal study with linkage to public registries. Parents of children with CP (n=3671) identified in the Danish CP Registry were compared with 17,983 parents of children without CP. Employment, income, cohabitation status, and presence of additional children were factors analysed during a follow-up period of 28 years. We followed parents from before their child was born and up to the age of 43 years of the child. RESULTS: Mothers of children with CP under the age of 10 were less often employed: odds ratio [OR] of employment at age 5y 0.45 (95% confidence interval [CI] 0.36-0.57), but only 11% left the labour market. Mothers of children without CP had higher incomes: ratio full-time working 1.11 (95% CI 1.07-1.15). The risk of not living together was not increased among parents of children with CP: at age 5 years OR 1.04 (95% CI 0.84-1.28). Parents of children with CP as the first born postponed or more seldom had subsequent children: hazard ratio [HR] 0.75 (95% CI 0.68-0.83). INTERPRETATION: The Danish welfare system seems to have succeeded in keeping parents in the labour market and living together with their child. Special attention needs to be paid to the financial situation of families with children with CP under 10 years of age.

Monitoring the prevalence of severe intellectual disability in children across Europe: feasibility of a common database.

AIM: Our aim was to study the feasibility of creating a framework for monitoring and undertaking collaborative research on intellectual disability at the European level, based on existing databases of children with such disability. METHOD: The characteristics of five existing European intellectual disability databases from four countries (Iceland, Latvia, Ireland, and two in France), were discussed on the basis of ideal criteria set by a working group on childhood intellectual disability as part of the Surveillance of Cerebral Palsy in Europe Network (SCPE-NET). Mean prevalence values for severe intellectual disability for the birth years 1990 till 2002 were compared across databases. RESULTS: Methods of case recruitment and diagnosis differed across databases, but classification of intellectual disability and completeness were similar. Severe intellectual disability (IQ<50) prevalence estimates were significantly (p<0.001) different across databases (south-east France: 3.3 out of 1000; south-west France: 3.0 out of 1000; Latvia: 3.9 out of 1000; Ireland: 5.0 out of 1000; and Iceland 5.1 out of 1000). INTERPRETATION: In spite of differences in diagnosis and case inclusion across databases, the construction of a common database for severe intellectual disability was deemed feasible through harmonization of certain criteria, such as age, and through restriction to those with severe intellectual disability.

Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment: a cross-sectional multicenter European study.

OBJECTIVE: To evaluate how participation of children with cerebral palsy (CP) varied with their environment. DESIGN: Home visits to children. Administration of Assessment of Life Habits and European Child Environment Questionnaires. Structural equation modeling of putative associations between specific domains of participation and environment, while allowing for severity of child's impairments and pain. SETTING: European regions with population-based registries of children with CP. PARTICIPANTS: Children (n=1174) aged 8 to 12 years were randomly selected from 8 population-based registries of children with CP in 6 European countries. Of these, 743 (63%) agreed to participate; 1 further region recruited 75 children from multiple sources. Thus, there were 818 children in the study. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Participation in life situations. RESULTS: For the hypothesized associations, the models confirmed that higher participation was associated with better availability of environmental items. Higher participation in daily activities-mealtimes, health hygiene, personal care, and home life-was significantly associated with a better physical environment at home (P<.01). Mobility was associated with transport and physical environment in the community. Participation in social roles (responsibilities, relationships, recreation) was associated with attitudes of classmates and social support at home. School participation was associated with attitudes of teachers and therapists. Environment explained between 14% and 52% of the variation in participation. CONCLUSIONS: The findings confirmed the social model of disability. The physical, social, and attitudinal environment of disabled children influences their participation in everyday activities and social roles.

Identifying and Characterizing Children of Parents with a Serious Illness Using Survey and Register Data.

PURPOSE: To estimate the prevalence and characterize children and adolescents aged 0-21 years with a physically or mentally ill parent based on registers. Further, to explore the use of register and survey data to identify parental serious illness. METHODS: The study is based on: 1) a 20% register sample of children and adolescents aged 0-21 in 2014; and 2) survey data from the Danish Youth Profile 2014 including 63,437 youth education students linked to registers. In registers, parental physical illness comprised hospital diagnoses included in the Charlson Comorbidity Index, and parental mental illness encompassed all mental diagnosis in the registers. Information about socioeconomic and demographic characteristics and use of health care services was retrieved from national registers. In the survey, students were asked if they had experienced serious illness of a parent. RESULTS: In the register sample of 0-21-year-olds, 25.3% had a parent with a physical or mental diagnosis, the prevalence increasing with age of the child. Compared to children without parental illness, children with an ill parent more frequently had unemployed parents, lower parental educational level, and a chronic medical condition. Analyses of the discrepancies between register and survey data revealed that 9% of the adolescents were identified as having an ill parent in both data sources and 64.1% had no identified ill parents. Moreover, a higher frequency of parental primary health care service use was seen for adolescents with an ill parent, across identification method, indicating that both methods identify adolescents with an ill parent. CONCLUSION: The social inequality and elevated frequency of health problems among children and adolescents with an ill parent, underline the vulnerability of this population. Parental illness can be identified from both parental hospital diagnoses as well as self-reported by adolescents, however the two methods detect different populations. Both methods have several limitations and would benefit from further refinement and validation.

Why Do Some Adolescents Manage Despite Parental Illness? Identifying Promotive Factors.

PURPOSE: This study aimed to examine the association between social support, leisure time, school experience, and well-being among adolescents with an ill parent. Moreover, we explored the cumulative effect of promotive factors in relation to well-being. METHODS: The population included a subsample of 676 students reporting serious or chronic parental illness, selected from a nationwide Danish survey, the Well-being Despite Study. Well-being was measured by the five-item World Health Organization Well-Being Index. Social support included support from parents, siblings, and friends. A positive school experience encompassed trust in teachers, classroom community, and overall judgment of the school. Leisure time included frequency of activities and having enough time for friends and oneself. We performed multilevel logistic regression analyses using SAS 9.4. RESULTS: Social support, a positive school experience, and leisure time were positively associated with well-being. For instance, for boys and girls who felt they had enough time to themselves, the odds ratio of moderate to high well-being was 3.7 (95% confidence interval [CI]: 1.8-7.7) and 2.9 (95% CI: 1.9-4.3) respectively, compared with boys and girls who did not. Cumulative analyses showed increasing odds of moderate to high well-being with increasing number of promotive factors, the odds ratio being 39.7 (CI 95%: 11.6-136.2) among adolescents with 10 promotive factors compared with adolescents with 0-5 promotive factors. CONCLUSIONS: Social support, a positive school experience, and satisfying leisure time may be important promotive factors, and the results point toward a more ecological approach to improve well-being among adolescents with ill parents.

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, children's pain should be carefully assessed.

Psychological problems in children with cerebral palsy: a cross-sectional European study.

OBJECTIVES: To describe psychological symptoms in 8-12-year-old children with cerebral palsy; to investigate predictors of these symptoms and their impact on the child and family. DESIGN: A cross-sectional multi-centre survey. PARTICIPANTS: Eight hundred and eighteen children with cerebral palsy, aged 8-12 years, identified from population-based registers of cerebral palsy in eight European regions and from multiple sources in one further region. MAIN OUTCOME MEASURES: The Strengths and Difficulties Questionnaire (SDQ)(P4-16) and the Total Difficulties Score (TDS) dichotomised into normal/borderline (TDS < or = 16) versus abnormal (TDS > 16). STATISTICAL ANALYSIS: Multilevel, multivariable logistic regression to relate the presence of psychological symptoms to child and family characteristics. RESULTS: About a quarter of the children had TDS > 16 indicating significant psychological symptoms, most commonly in the domain Peer Problems. Better gross motor function, poorer intellect, more pain, having a disabled or ill sibling and living in a town were independently associated with TDS > 16. The risk of TDS > 16 was odds ratio (OR) = .2 (95% CI: .1 to .3) comparing children with the most and least severe functional limitations; OR = 3.2 (95%CI: 2.1 to 4.8) comparing children with IQ < 70 and others; OR = 2.7 (95% CI: 1.5 to 4.6) comparing children in severe pain and others; OR = 2.7 (95% CI:1.6 to 4.6) comparing children with another disabled sibling or OR = 1.8 (95%CI: 1.2 to 2.8) no siblings and others; OR = 1.8 (95% CI: 1.1 to 2.8) comparing children resident in a town and others. Among parents who reported their child to have psychological problems, 95% said they had lasted over a year, 37% said they distressed their child and 42% said they burdened the family at least 'quite a lot'. CONCLUSIONS: A significant proportion of children with cerebral palsy have psychological symptoms or social impairment sufficiently severe to warrant referral to specialist services. Care must be taken in the assessment and management of children with cerebral palsy to ensure psychological problems are not overlooked and potentially preventable risk factors like pain are treated effectively. The validity of the SDQ for children with severe disability warrants further assessment.

Family adaptation to cerebral palsy in adolescents: A European multicenter study.

BACKGROUND AND AIM: Factors promoting family adaptation to child's disability are poorly studied together. The aim of the study was to describe the family adaptation to disability and to identify determinants associated with using a global theoretical model. MATERIALS AND METHODS: 286 families of teenagers [13-17 years] with cerebral palsy (CP) from 4 European disability registers were included and visited at home. Face to face interviews were performed in order to measure parental distress, perceived impact in various dimensions of family life, family resources and stressors. Relationships were modelled with structural equations. RESULTS: 31.8% of parents living with an adolescent with CP showed clinically significant high stress requiring professional assistance. The main stressors were the level of motor impairment and behavioural disorders in adolescent. A good family functioning was the best protective factor. Respite in care and a parents' positive attitude were significantly related to less parental distress. Material support, socioeconomical level, marital status or parental qualifications did not appear to be significant protector factors. CONCLUSIONS: Particular attention must be paid not only on physical condition but also on adolescent psychological problems to improve family adaptation. Families at risk of experiencing severe distress should be targeted early and proactive caregiver interventions on the whole family should be performed. WHAT THIS PAPER ADDS: Family is a dynamic system: facing disability, it tries to recover its balance with available resources and its perception of the situation. Literature highlights potential stressors and protecting factors that could affect the disabled child's family adaptation but few papers study a global model including most of these factors. This study validated a global theoretical model of family adaptation to disability at adolescence. It identified behaviour disorders and motor impairment level as main stressors, family functioning as the largest protecting factors, and equipment and financial support as non significant protective factors.

Predictors of parent-reported quality of life of adolescents with cerebral palsy: A longitudinal study.

AIM: Parent-reporting is needed to examine Quality of Life (QoL) of children with cerebral palsy (CP) across all severities. This study examines whether QoL changes between childhood and adolescence, and what predicts adolescent QoL. METHOD: SPARCLE is a European cohort study of children with CP, randomly sampled from population databases. Of 818 8-12-year-olds joining the study, 594 (73%) were revisited as 13-17-year-olds. The subject of this report is the 551 (316 boys, 235 girls) where the same parent reported QoL on both occasions using KIDSCREEN-52 (transformed Rasch scale, mean 50, SD 10 per domain). Associations were assessed using linear regression. RESULTS: Between childhood and adolescence, average QoL reduced in six domains (1.3-3.8 points, p<0.01) and was stable in three (Physical wellbeing, Autonomy, Social acceptance). Socio-demographic factors had little predictive value. Childhood QoL was a strong predictor of all domains of adolescent QoL. Severe impairments of motor function, IQ or communication predicted higher adolescent QoL on some domains; except that severe motor impairment predicted lower adolescent QoL on the Autonomy domain. More psychological problems and higher parenting stress in childhood and their worsening by adolescence predicted lower QoL in five and eight domains respectively; contemporaneous pain in seven domains. The final model explained 30%-40% of variance in QoL, depending on domain. INTERPRETATION: In general, impairment severity and socio-demographic factors were not predictors of lower adolescent QoL. However, pain, psychological problems and parenting stress were predictors of lower adolescent QoL in most domains. These are modifiable factors and addressing them may improve adolescent QoL.

Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy.

BACKGROUND: SPARCLE is a cross-sectional survey in nine European regions, examining the relationship of the environment of children with cerebral palsy to their participation and quality of life. The objective of this report is to assess data quality, in particular heterogeneity between regions, family and item non-response and potential for bias. METHODS: 1,174 children aged 8-12 years were selected from eight population-based registers of children with cerebral palsy; one further centre recruited 75 children from multiple sources. Families were visited by trained researchers who administered psychometric questionnaires. Logistic regression was used to assess factors related to family non-response and self-completion of questionnaires by children. RESULTS: 431/1,174 (37%) families identified from registers did not respond: 146 (12%) were not traced; of the 1,028 traced families, 250 (24%) declined to participate and 35 (3%) were not approached. Families whose disabled children could walk unaided were more likely to decline to participate. 818 children entered the study of which 500 (61%) self-reported their quality of life; children with low IQ, seizures or inability to walk were less likely to self-report. There was substantial heterogeneity between regions in response rates and socio-demographic characteristics of families but not in age or gender of children. Item non-response was 2% for children and ranged from 0.4% to 5% for questionnaires completed by parents. CONCLUSION: While the proportion of untraced families was higher than in similar surveys, the refusal rate was comparable. To reduce bias, all analyses should allow for region, walking ability, age and socio-demographic characteristics. The 75 children in the region without a population based register are unlikely to introduce bias.

Predictors of participation of adolescents with cerebral palsy: A European multi-centre longitudinal study.

We investigated whether childhood factors that are amenable to intervention (parenting stress, child psychological problems and pain) predicted participation in daily activities and social roles of adolescents with cerebral palsy (CP). We randomly selected 1174 children aged 8-12 years from eight population-based registers of children with CP in six European countries; 743 (63%) agreed to participate. One further region recruited 75 children from multiple sources. These 818 children were visited at home at age 8-12 years, 594 (73%) agreed to follow-up at age 13-17 years. We used the following measures: parent reported stress (Parenting Stress Index Short Form), their child's psychological difficulties (Strength and Difficulties Questionnaire) and frequency and severity of pain; either child or parent reported the child's participation (LIFE Habits questionnaire). We fitted a structural equation model to each of the participation domains, regressing participation in childhood and adolescence on parenting stress, child psychological problems and pain, and regressing adolescent factors on the corresponding childhood factors; models were adjusted for impairment, region, age and gender. Pain in childhood predicted restricted adolescent participation in all domains except Mealtimes and Communication (standardized total indirect effects ß -0.05 to -0.18, 0.01

European study of frequency of participation of adolescents with and without cerebral palsy.

Children with cerebral palsy participate less in everyday activities than children in the general populations. During adolescence, rapid physical and psychological changes occur which may be more difficult for adolescents with impairments. Within the European SPARCLE project we measured frequency of participation of adolescents with cerebral palsy by administering the Questionnaire of Young People's Participation to 667 adolescents with cerebral palsy or their parents from nine European regions and to 4666 adolescents from the corresponding general populations. Domains and single items were analysed using respectively linear and logistic regression. Adolescents with cerebral palsy spent less time with friends and had less autonomy in their daily life than adolescents in the general populations. Adolescents with cerebral palsy participated much less in sport but played electronic games at least as often as adolescents in the general populations. Severity of motor and intellectual impairment had a significant impact on frequency of participation, the more severely impaired being more disadvantaged. Adolescents with an only slight impairment participated in some domains as often as adolescents in the general populations. Regional variation existed. For example adolescents with cerebral palsy in central Italy were most disadvantaged according to decisional autonomy, while adolescents with cerebral palsy in east Denmark and northern England played sports as often as their general populations. Participation is an important health outcome. Personal and environmental predictors of participation of adolescents with cerebral palsy need to be identified in order to design interventions directed to such predictors; and in order to inform the content of services.

Measuring the concept of impact of childhood disability on parents: validation of a multidimensional measurement in a cerebral palsy population.

Living with a child with a disability can affect family life in various domains. Impacts on time, expenses, work, relationships within the family, social relationships and physical and psychological health can be observed. The Family Impact of Childhood Disability (FICD) is a specific instrument designed to assess this situation. Used in a cross-sectional survey, this questionnaire was extended to consider two missing aspects: impact on work and health (FICD+4). This paper addresses the psychometric qualities of the FICD in Europe among parents living with an adolescent with cerebral palsy. Expecting the FICD+4 could assess detailed impact dimensions, an exploratory analysis was conducted. We interviewed 242 families of 13- to 17-year-old adolescents with cerebral palsy living in Europe. Good psychometric properties were found in negative and positive FICD scales and in six underlying factors extracted from exploratory factor analysis on FICD+4. These results support the psychometric validity of the FICD in the assessment of the impact of disability in European families who live with an adolescent with cerebral palsy. They also highlight the multifaceted aspects of the impact of childhood disability on the family and suggest that the FICD+4 is a good tool for assessing specific negative impacts on time, finances, work, social relationships and positive impacts on parental feeling and family attitude. This scale needs further validation and could be helpful for research and clinical interventions.

Predictors of drop-out in a multi-centre longitudinal study of participation and quality of life of children with cerebral palsy.

BACKGROUND: SPARCLE is a study across nine European regions which examines the predictors of participation and quality of life of children with cerebral palsy. Children and their families were initially interviewed in 2004/2005 when the children were aged 8-12 years (SPARCLE1); they were approached again in 2009/2010 at age 13-17 years (SPARCLE2). The objective of this report is to assess potential for bias due to family non-response in SPARCLE2. Logistic regression was used to assess whether socio-demographic factors, parental stress and child impairment were related to non-response, both overall and by category (failure to trace families, death of child, traced families declining to participate). RESULTS: Of the 818 families who participated in SPARCLE1, 224/818 (27%) did not participate in SPARCLE2. 51/818 (6%) were not traced. Among the 767 traced families, 32/767 (4%) children with cerebral palsy had died, seven children had been incorrectly diagnosed as having cerebral palsy, thirteen families had moved out of the region and one family had language problems. Of the remaining 714 families, 120/714 (17%) declined to participate. Drop-out between SPARCLE1 and SPARCLE2 varied significantly between regions; families were more difficult to trace and more likely to decline to participate if the parents' educational qualifications, as recorded in SPARCLE1, were lower; they were also more likely to decline to participate if SPARCLE1 recorded that they were more stressed or if they had not completed a SPARCLE1 stress questionnaire. CONCLUSIONS: To reduce the risk of bias, all SPARCLE2 analyses should allow for factors (region and walking ability) which determined the sampling strategy, either by adjusting for these factors or by using sampling weights. Further analyses should be performed, adjusting for additional factors that were associated with non-response: parents' educational qualifications, family structure and parental stress. To allow for differential non-response in studies which sample from population registers, such registers should routinely record socio-demographic information.