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Jackie Parkes

Publications and source records attributed to Jackie Parkes.

7 recordsLinked to original sources
PubMed2006

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.

Bias↗
PubMed2006

UKCP: a collaborative network of cerebral palsy registers in the United Kingdom.

Cerebral palsy (CP) is a relatively rare condition with enormous social and financial impact. Information about CP is not routinely collected in the United Kingdom. We have pooled non-identifiable data from the five currently active UK CP registers to form the UKCP database: birth years 1960-1997. This article describes the rationale behind this collaboration and the creation of the database. Data about 6910 children with CP are currently held. The mean annual prevalence rate was 2.1 [corrected] per 1000 live births for birth years 1986-1996. Where type is known, 91 per cent have spastic CP. Where data are available, nearly one-third of children have severely impaired lower limb function, and nearly a quarter have severely impaired upper limb function. As well as describing the range and complexity of motor and associated impairments, the pooled data from the UKCP database provide a platform for studies of aetiology, long-term outcomes, participation and service needs. The UKCP database is an important national resource for the surveillance of CP and the study of its epidemiology in the United Kingdom.

Adolescent↗
PubMed2006

Trends in the prevalence of cerebral palsy in Northern Ireland, 1981-1997.

We describe trends in the prevalence of cerebral palsy (CP) by birthweight group, and in the severity of motor impairments and presence of associated intellectual impairment, in Northern Ireland from 1981 to 1997 (n=909; 510 males, 399 females; total population 415,936 live births) using data from a population-based register of CP. Children with suspected CP or who died before 1 year of age and those with CP of postneonatal origin were excluded. Prevalence of CP was 2.2 per 1,000 live births without significant change over time. Among very-low-birthweight (<1,500 g) live births, prevalence was 44.5 per 1,000 (95% confidence interval 32.3-59.8) from 1994 to 1997, with evidence of a statistically significant decline in prevalence since the mid- to late 1980s accompanied by a decrease in the severity of motor impairment and likelihood of intellectual impairment. Among moderately-low-birthweight (1,500-2,499 g) children there was weaker evidence of a peak prevalence in the late 1980s. Prevalence among normal-birthweight infants did not change significantly, but outcome in terms of severity of motor impairment and intellectual impairment improved in the 1990s. Occurrence of bilateral spasticity from 1994 to 1997 was associated with greater severity and likelihood of intellectual impairment for normal-birthweight individuals than for low- or very-low-birthweight individuals.

Cerebral Palsy↗
PubMed2006

Accommodative dysfunction in children with cerebral palsy: a population-based study.

PURPOSE: To determine the prevalence, nature, and degree of accommodative dysfunction among children with different types and severities of cerebral palsy (CP) in Northern Ireland. METHODS: Ninety subjects with CP (aged 4-15 years) were recruited through the Northern Ireland CP Register (NICPR). Modified Nott dynamic retinoscopy was used to measure lag and lead of accommodation at three test distances: 25 cm (4 D), 16.7 cm (6 D), and 10 cm (10 D) with the distance correction in place. Accommodative function was also assessed in an age-matched control group (n = 125) for comparison. Each subject's neurologic status was derived from the NICPR. RESULTS: Children with CP demonstrate significantly reduced accommodative responses compared with their neurologically normal peers. Of the subjects with CP, 57.6% demonstrated an accommodative lag outside normal limits at one or more distances. Reduced accommodative responses were significantly associated with more severe motor and intellectual impairments (ANOVA P = 0.001, P < 0.01, respectively). CONCLUSIONS: Brain injury such as that present in CP has a significant impact on accommodative function. These findings have implications for the optometric care of children with CP and inform our understanding of the impact of early brain injury on visual development.

Accommodation, Ocular↗
PubMed2006

Recruitment bias in a population-based study of children with cerebral palsy.

OBJECTIVE: The purpose of this analysis was to assess recruitment bias in a population-based study of locomotor ability in children with cerebral palsy. METHOD: A population-based case register was used as a sampling frame and was considered a highly ascertained record of children with the condition. A twin track approach to recruitment for the Locomotor Study was adopted through: (1) a specialist orthopedic service and (2) a community pediatric network on behalf of the case register. The subjects included children with cerebral palsy aged 4 to 16 years in 2003, able to walk > or = 10 m, and a resident in Northern Ireland, as well as their parents. RESULTS: The Orthopaedic Service identified clinically distinct children with cerebral palsy in terms of type, severity, age, and geographic residence. More families responded to an invitation, and more were ultimately recruited into the study via the Orthopaedic Service compared with a case register using community pediatric contacts. Overall, 37.8% of the eligible cerebral palsy population participated in the Locomotor Study, but there was no evidence of any systematic biases in demographic or key clinical characteristics when compared with nonparticipants. One follow-up reminder led to an increase in recruitment of 10%. CONCLUSIONS: Care must be taken in the recruitment of children with cerebral palsy through clinic-based populations, although these routes may prove more successful in follow-up. Provided they are comprehensive, case registers have a valuable contribution to make to clinical research by providing a sampling frame including information on baseline characteristics of an affected population.

Benchmarking↗
PubMed2005

Validity of a 1 minute walk test for children with cerebral palsy.

The concurrent validity of a 1 minute walk test at a child's maximum walking speed was assessed in children with bilateral spastic cerebral palsy (BSCP). The distance covered during the 1 minute walk test was compared with the children's gross motor function as assessed by the Gross Motor Function Measure (GMFM). Twenty-four male and 10 female children with CP (mean age 11y, range 4 to 16y) participated in the study. Gross Motor Function Classification System (GMFCS) levels were; level I (n=3), level II (n=17), level III (n=10), and level IV (n=4). Participants had clinical diagnoses of symmetrical diplegia (n=19), asymmetrical diplegia (n=14), and quadriplegia (n=1). Results showed a significant correlation between GMFM score and the distance covered during the 1 minute walk (r=0.92; p<0.001). There was also a significant decrease in the distance walked with increasing GMFCS level (p<0.001). We concluded that the 1 minute walk test is a valid measure for assessing functional ability in children with ambulatory BSCP. Its cost-effectiveness and user friendliness make it a potentially useful tool in the clinical setting. Further study needs to address its reliability and ability to detect change over time.

Adolescent↗