| 1. |
- Dickinson, H. O., et al.
(author)
-
Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study
- 2007
-
In: Lancet. - 1474-547X. ; 369:9580, s. 2171-8
-
Journal article (peer-reviewed)abstract
- 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.
|
|
| 2. |
|
|
| 3. |
- Arnaud, C., et al.
(author)
-
Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population - SPARCLE 3 study protocol
- 2021
-
In: BMC Neurology. - : Springer Science and Business Media LLC. - 1471-2377. ; 21:1
-
Journal article (peer-reviewed)abstract
- BACKGROUND: Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. METHODS: The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. DISCUSSION: This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.
|
|
| 4. |
- Bagazgoitia, N. V. D., et al.
(author)
-
Quality of Life in Young Adults With Cerebral Palsy: A Longitudinal Analysis of the SPARCLE Study
- 2021
-
In: Frontiers in Neurology. - : Frontiers Media SA. - 1664-2295. ; 12
-
Journal article (peer-reviewed)abstract
- Introduction: While most people with cerebral palsy (CP) will have a life expectancy similar to that of the general population, international research has primarily focused on childhood and adolescence; and knowledge about the quality of life (QoL) of young adults with CP, its trajectories, and associated factors remains scarce.Methods: This longitudinal study included young adults with CP living in five European regions and who had previously participated in the SPARCLE cohort as children and/or adolescents. Their QoL in the psychological well-being and social relationships domains was estimated using age-appropriate validated instruments (KIDSCREEN-52 in childhood/adolescence and WHOQOL-Bref in young adulthood). We used generalized linear mixed-effect models with random intercept to estimate long-term trajectories of QoL in both domains and to investigate whether severity of impairment, pain, and seizure influenced these trajectories. We sought to identify potentially different trajectories of QoL from childhood to adulthood using a shape-based clustering method.Results: In total, 164 young adults with CP aged 22-27 years participated in the study. Psychological well-being linearly decreased by 0.78 points (scale 0-100) per year (95% confidence interval (CI) -0.99 to -0.56) from childhood to young adulthood, whereas QoL in the social relationships domain increased (beta coefficient 1.24, 95% CI 0.92-1.55). Severity of impairment was associated with reduced QoL in all life periods of the study (childhood, adolescence, and young adulthood): motor impairment with social relationships, and more nuancedly intellectual disability with psychological well-being and social relationships. At all periods, frequent pain significantly reduced psychological well-being, and seizures were associated with lower QoL in the social relationships domain. In both domains, we identified a group of individuals with CP who presented a reverse trajectory compared with the general QoL trajectory.Conclusion: Identification of QoL trajectories and their associated factors yields improved knowledge about the experience of individuals with CP until young adulthood. Further studies are needed to better understand the determinants that have the greatest influence on the different shapes of long-term trajectories of QoL.
|
|
| 5. |
- Beckung, Eva, 1950, et al.
(author)
-
Health status of children with cerebral palsy living in Europe: a multi-centre study.
- 2008
-
In: Child: care, health and development. - : Wiley. - 1365-2214 .- 0305-1862. ; 34:6, s. 806-14
-
Journal article (peer-reviewed)abstract
- AIM: The aim of this report is to describe the health status of 8-12-year-old children with cerebral palsy (CP) of all severities in Europe using the Child Health Questionnaire (CHQ). METHOD: A total of 818 children with CP from nine centres in defined geographical areas participated. CP type, gross and fine motor function, additional impairments were classified and family data were obtained. The CHQ was used to measure the parent's perception of their child's physical (PHY) and psychosocial (PSY) health. RESULTS: PHY scores were lower than the reference samples with a median of 46. The severity of gross motor function influenced the CHQ scores significantly in the PHY scale with the lowest scores for children with least gross motor function. There were significant differences between the CP types in PHY with the higher scores for children with unilateral spastic and the lowest scores for children with bilateral spastic and dyskinetic CP type. Fine motor function severity significantly affected both the PHY and PSY scales. The severity of intellectual impairment was significantly associated with CHQ scores in most dimensions with higher scores for higher IQ level in PHY and PSY. Children with seizures during the last year had a significantly lower health compared with children without seizures. The results of the multivariate regression analyses (forward stepwise regression) of CHQ scores on CP subtype, gross and fine motor function, cognitive function, additional impairments, seizures, parental education and employment revealed gross motor function, cognitive level and type of school attended were significant prognostic factors. CONCLUSION: This report is based on the largest sample to date of children with CP. Health status as measured using the CHQ was affected in all children and was highly variable. Gross motor function level correlates with health from the PHY well-being perspective but the PSY and emotional aspects do not appear to follow the same pattern.
|
|
| 6. |
|
|
| 7. |
- Bennecke, E, et al.
(author)
-
Early Genital Surgery in Disorders/Differences of Sex Development: Patients' Perspectives
- 2021
-
In: Archives of sexual behavior. - : Springer Science and Business Media LLC. - 1573-2800 .- 0004-0002. ; 50:3, s. 913-923
-
Journal article (peer-reviewed)abstract
- Controversy continues over a proposed moratorium on elective genital surgery in childhood for disorders/differences of sex development (DSD). Empirical evidence on patient preference is needed to inform decision-making. We conducted a multicentre survey by cross-sectional questionnaire in 14 specialized clinics in six European countries. The sample comprised 459 individuals (≥ 16 years) with a DSD diagnosis, including individuals with congenital adrenal hyperplasia (CAH) (n = 192), XY DSD with prenatal androgen effect (A) (n = 150), and without (nA) (n = 117). Main outcome measures were level of agreement with given statements regarding genital surgery, including clitoris reduction, vaginoplasty, and hypospadias repair. A total of 66% of individuals with CAH and 60% of those with XY DSD-A thought that infancy or childhood were the appropriate age for genital surgery. Females with XY DSD were divided on this issue and tended to prefer vaginoplasty at a later age (XY DSD-A 39%, XY DSD-nA 32%). A total of 47% of males preferred early hypospadias surgery. Only 12% (CAH), 11% (XY DSD-A), and 21% (XY DSD-nA) thought they would have been better off without any surgery in childhood or adolescence. Individuals who had early genital surgery were more likely to approve of it. Outcome data failed to support a general moratorium on early elective genital surgery. Participant perspectives varied considerably by diagnostic category, gender, history of surgery, and contact with support groups. Case-by-case decision-making is better suited to grasping the ethical complexity of the issues at stake.Trial registration: German Clinical Trials Register DRKS00006072.
|
|
| 8. |
- Colver, A., et al.
(author)
-
Association Between Participation in Life Situations of Children With Cerebral Palsy and Their Physical, Social, and Attitudinal Environment: A Cross-Sectional Multicenter European Study
- 2012
-
In: Archives of Physical Medicine and Rehabilitation. - : Elsevier BV. - 0003-9993. ; 93:12, s. 2154-2164
-
Journal article (peer-reviewed)abstract
- Colver A, Thyen U, Arnaud C, Beckung E, Fauconnier J, Marcelli M, McManus V, Michelsen SI, Parkes J, Parkinson K, Dickinson HO. Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment: a cross-sectional multicenter European study. Arch Phys Med Rehabil 2012;93: 2154-64. 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; I 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.
|
|
| 9. |
- Colver, A., et al.
(author)
-
Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis
- 2015
-
In: Lancet. - : Elsevier BV. - 0140-6736. ; 385:9969, s. 705-716
-
Journal article (peer-reviewed)abstract
- 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. Copyright (C) Colver et al. Open Access article distributed under the terms of CC BY.
|
|
| 10. |
|
|
| 11. |
- Dickinson, H., et al.
(author)
-
Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy
- 2006
-
In: BMC Public Health. - : Springer Science and Business Media LLC. - 1471-2458. ; 6
-
Journal article (peer-reviewed)abstract
- 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.
|
|
| 12. |
|
|
| 13. |
|
|
| 14. |
|
|
| 15. |
|
|
| 16. |
- Rapp, M., et al.
(author)
-
Predictors of parent-reported quality of life of adolescents with cerebral palsy: A longitudinal study
- 2017
-
In: Research in Developmental Disabilities. - : Elsevier BV. - 0891-4222. ; 62, s. 259-270
-
Journal article (peer-reviewed)abstract
- 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. (C) 2016 Elsevier Ltd. All rights reserved.
|
|
| 17. |
|
|
| 18. |
|
|
| 19. |
- Schmidt, S., et al.
(author)
-
Cross-cultural development of a child health care questionnaire on satisfaction, utilization, and needs
- 2007
-
In: Ambul Pediatr. - 1530-1567. ; 7:5, s. 374-82
-
Journal article (peer-reviewed)abstract
- OBJECTIVE: The instrument Child Health Care-Satisfaction, Utilization and Needs (CHC-SUN) has been developed cross-culturally to evaluate pediatric health care services for children with special health care needs (CSHCN) from the proxy perspective of parents. METHODS: The children of the participating parents received treatment in pediatric specialty clinics in 7 European countries for asthma, cystic fibrosis, diabetes, epilepsy, cerebral palsy, rheumatoid arthritis, and atopic dermatitis. The instrument was developed through a process including literature review, expert consensus, and item generation through focus groups. The pilot instrument was extensively tested to assess psychometric properties, support item reduction, and evaluate clinical validity. The final field version was tested in a new sample of 795 parents in 7 countries. RESULTS: Pilot testing and item reduction resulted in a practical 40-item instrument with 14 single items related to provision of services (module 1), and 26 items related to 6 scales on satisfaction with care (module 2), and 1 item on general satisfaction with care. Satisfaction with care scales showed very good psychometric properties, both initially and in the field version, with Cronbach's alpha ranging between .80 and .95 in the revised scales. Both modules discriminated well between functional status and diagnosis across countries. CONCLUSIONS: A new instrument is available to measure provision of services and satisfaction with care for children with chronic conditions from the perspective of parents. Cross-cultural analysis reveals that the measure is useful in multinational studies evaluating health services against the background of different health systems.
|
|
| 20. |
- Schmidt, S., et al.
(author)
-
Healthcare needs and healthcare satisfaction from the perspective of parents of children with chronic conditions: the DISABKIDS approach towards instrument development
- 2008
-
In: Child: Care, Health and Development. - : Wiley. - 1365-2214 .- 0305-1862. ; 34:3, s. 355-66
-
Journal article (peer-reviewed)abstract
- AIM: Increasingly, families' perspectives are taken into account in the appraisal of health services. The objective of this study was to cross-culturally analyse concepts related to healthcare needs, healthcare utilization and the appraisal and satisfaction with care of parents of children with chronic conditions with the aim of developing a cross-cultural measure. METHODS: Several approaches were employed in the study: (i) a deductive approach integrating existing measurements; and (ii) an inductive approach based on focus groups. Focus groups were conducted in seven countries with mothers and fathers as well as their children with seven different chronic conditions, and qualitatively analysed. RESULTS: As a result of an evaluation of the different existing methodological approaches, the basic structural components were identified: healthcare needs, the receipt of services, problems with receiving services as well as the appraisal of and satisfaction with the quality of care. While items referring to existing healthcare services were primarily derived by the work of an expert group, items related to quality of care and satisfaction with services mainly evolved from the focus group work. From the focus groups, 367 statements were extracted, which were further processed in a Q-sort rating by a multinational expert group in order to identify domains and salient items. The draft questionnaire to be pilot tested cross-nationally consisted of 101 items which were reduced on the basis of psychometric findings. CONCLUSION: On the basis of results of focus groups and existing evidence, a comprehensive measure should be employed in paediatric health services research including structural, process and outcome parameters of care from the perspective of parents.
|
|
| 21. |
|
|
| 22. |
|
|
| 23. |
- White-Koning, M, et al.
(author)
-
Determinants of child-parent agreement in quality-of-life reports: a European study of children with cerebral palsy.
- 2007
-
In: Pediatrics. 2007. ; 4:Oct;120
-
Journal article (peer-reviewed)abstract
- OBJECTIVES: The differences between child self-reports and parent proxy reports of quality of life in a large population of children with cerebral palsy were studied. We examined whether child characteristics, severity of impairment, socioeconomic factors, and parental stress were associated with parent proxy reports being respectively higher or lower than child self-reports of quality of life. METHODS: This study was conducted in 2004-2005 and assessed child quality of life (using the Kidscreen questionnaire, 10 domains, each scored 0-100) through self-reports and parent proxy reports of 500 children aged 8 to 12 years who had cerebral palsy and were living in 7 countries in Europe. RESULTS: The mean child-reported scores of quality of life were significantly higher than the parent proxy reports in 8 domains, significantly lower for the finances domain, and similar for the emotions domain. The average frequency of disagreement (child-parent difference greater than half an SD of child scores) over all domains was 64%, with parents rating their child's quality of life lower than the children themselves in 29% to 57% of child-parent pairs. We found that high levels of stress in parenting negatively influenced parents' perception of their child's quality of life, whereas the main factor explaining parents' ratings of children's quality of life higher than the children themselves is self-reported severe child pain. CONCLUSIONS: This study shows that the factors associated with disagreement are different according to the direction of disagreement. In particular, parental well-being and child pain should be taken into account in the interpretation of parent proxy reports, especially when no child self-report of quality of life is available. In the latter cases, it may be advisable to obtain additional proxy reports (from caregivers, teachers, or clinicians) to obtain complementary information on the child's quality of life. PMID: 17908738 [PubMed - indexed for MEDLINE] Related LinksThe health and well-being of caregivers of children with cerebral palsy. [Pediatrics. 2005]Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. [Health Qual Life Outcomes. 2006]Health-related quality of life in pediatric bone marrow transplant survivors: according to whom? [Int J Cancer Suppl. 1999]Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study. [Lancet. 2007]Health-related quality of life in children and adolescents who have a diagnosis of attention-deficit/hyperactivity disorder. [Pediatrics. 2004]
|
|
