Children with stable asthma have reduced airway matrix metalloproteinase-9 and matrix metalloproteinase-9/tissue inhibitor of metalloproteinase-1 ratio

Background Childhood asthma is characterized by inflammation of the airways. Structural changes of the airway wall may also be seen in some children early in the course of the disease. Matrix metalloproteinases (MMPs) are key mediators in the metabolism of the extracellular matrix (ECM). Objective To investigate the balance of MMP-8, MMP-9 and tissue inhibitor of metalloproteinases (TIMP)-1 in the airways of children with asthma. Methods One hundred and twenty-four children undergoing elective surgical procedures also underwent non-bronchoscopic bronchoalveolar lavage (BAL). MMP-8, MMP-9 and TIMP-1 were measured by ELISA. Results There was a significant reduction in MMP-9 in atopic asthmatic children (n=31) compared with normal children (n=30) [median difference: 0.57 ng/mL (95% confidence interval: 0.18–1.1 ng/mL)]. The ratio of MMP-9 to TIMP-1 was also reduced in asthmatic children. Levels of all three proteins were significantly correlated to each other and to the relative proportions of particular inflammatory cells in BAL fluid (BALF). Both MMP-8 and MMP-9 were moderately strongly correlated to the percentage neutrophil count (r=0.40 and 0.47, respectively, P

Removing children from the care of adults with diagnosed mental illnesses - a clash of human rights?

Health and social services providers throughout Europe are increasingly aware of the possibility of litigation from service users arising from the application of a human rights perspective to public service provision. The substantial body of case law that has emerged from the European Court of Human Rights (ECHR) is used regularly as the basis for this litigation at national and European levels. This paper presents an analysis of ECHR cases related to breaches of human rights that occurred when children were taken into care from families in which one or both parents had a diagnosed mental illness. The issues raised by these cases include the following: how to ensure that the right to family life is protected for adults with mental illnesses; how to ensure access and opportunities for parents to continue bonding with children in care; and how to avoid damaging children while giving time for a proper assessment of the care situation.

Use of physiotherapy and alternatives by children with cerebral palsy: a population study

Objectives: To describe the use of physiotherapy services and alternative therapies by a population of children with moderate to severe cerebral palsy (CP).
Design: Descriptive cross-sectional survey.
Subjects: A total of 212 parents of children aged 4–14 years with moderate to severe CP were identified from the Northern Ireland Cerebral Palsy Register (NICPR) and a random subsample of their paediatric physiotherapists.
Main measures: A standardized description of motor impairment or assessment form; a postal questionnaire to parents and paediatric physiotherapists (to validate parents’ reports of service use).
Response rates: In total, 85% of parent questionnaires were returned and 100% of paediatric physiotherapists responded.
Results: Service use among families was high; on average the families had contact with approximately seven services in a 6-month time interval. The overwhelming majority of children (96%) received physiotherapy during the school term and most (59%) received treatment at least twice a week for 30 min; 43% of children had their physiotherapy discontinued over the summer holidays. Over one-quarter (28%) of families had opted out of the NHS and bought alternatives like conductive education (21%) or private forms of conventional physiotherapy (16%). Children with more severe forms of CP, in special education, particularly at schools for physical disability, were high-intensity users of the physiotherapy service. Despite this, 74% of parents wanted more physiotherapy for their child.
Conclusions and implications: The demand for physiotherapy services is likely to continue given the relatively stable prevalence rate of CP, the proportion of children with disabling CP and the level of parent interest in the service. A number of quality aspects and gaps in the service have been identified.

Making doors open: caring for families of children with severe cerebral palsy

Cerebral palsy is a relatively rare condition affecting approximately 2-2.5 children in every 1,000 (Parkes et al 2001). It is a leading cause of physical disability in childhood and is often associated with severe motor and other impairments (Table 1). Improved survival of small and premature babies who are particularly at risk of developing the condition raises concerns about increasing numbers of children with cerebral palsy possibly with more severe forms. In the UK, information about the number and needs of children with CP is not collected routinely. The most reliable sources of information on CP in the UK comes from five dedicated case registers which have monitored live births in their respective geographically defined areas since the 1960s and 1970s. These registers have formed a collaborative network called the United Kingdom Collaboration of Cerebral Palsy Registers (or UKCP) and are listed in Table 2. All five registers are currently funded and all are active in surveillance activities and research.

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

Determinants of Child-Parent Agreement in Quality-of-Life Reports: A European Study of Children With Cerebral Palsy

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 wellbeing 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.

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.