Development and validation of a tool to measure the impact of childhood disabilities on the lives of children and their families.

OBJECTIVE: Information on registers of children with special needs will be more meaningful if a validated measure of the severity of impact of a child's disability on life and family is included. DESIGN: We describe the development and initial validation of a parent-completed questionnaire (Generic Lifestyle Assessment Questionnaire LAQ-G) aimed at measuring such impact. RESULTS: Data were collected on 95 case children, representing various disabilities, and 65 control children without disability, and analysed for case-control, test-re-test and inter-reporter reliability. Multidimensional scaling techniques were then used to derive six domains, representing impact of disability in a structure analogous to the participation domains of the revised International Classification ICF (WHO 2001). CONCLUSIONS: Initial results suggest that the LAQ-G is a reliable measure of the impact of disability for children with a range of common disabling conditions.

Creating a measure of impact of childhood disability: statistical methodology.

The aim of the study was to develop a statistical method to derive a domain structure for the development of an impact of disability index, using multidimensional scaling of questionnaire items and expert and non-expert judgement of severity based on standardised videos. The participants were parents of children with cerebral palsy, parents of children in mainstream schools and clinicians with expertise in cerebral palsy, all accessed through child health services in the north east of England. The methods to create a weighted, domain structure for use with the impact of disability index were developed. Multidimensional scaling techniques can be used to derive dimensional data structures. Standardised video material can be used to elicit expert judgements of severity of disability.

Effect of severity of disability on survival in north east England cerebral palsy cohort.

AIMS: To investigate the effect of motor and cognitive disabilities on the survival of people on the North of England Collaborative Cerebral Palsy Survey, and compare this with other published results. METHODS: The cerebral palsy cohort consists of 1960-1990 births in Northumberland, Newcastle, and North Tyneside health districts. Survival and cause of death were analysed in relation to data on birth, disabilities, and a unique measure of the impact of disability. RESULTS: Disability strongly influences survival. More than a third of those with a severe disability die before age 30. Fewer than a third of deaths are attributed to cerebral palsy on death certificates. Of those with severe cognitive disability, 63% live to age 35 (58% with severe ambulatory disability and 53% with severe manual disability), whereas at least 98% without severe disabilities live to age 35. The Lifestyle Assessment Score (LAS) allows a finer categorisation of impact of disability, and is strongly associated with survival: a ten point increase in LAS is associated with a doubling of the hazard rate. People who had LAS of at least 70, and had survived to age 5 have a 39% chance of dying before age 35. CONCLUSIONS: The majority of people with cerebral palsy attain adulthood. There appears to be more variation in survival rates associated with severe disability between regions of England, than between north east England, British Columbia, and California. Instantaneous risks of dying vary widely between England and California. This variation is not obviously attributable to differing rates of severe disability.

Increasing rates of cerebral palsy across the severity spectrum in north-east England 1964-1993. The North of England Collaborative Cerebral Palsy Survey.

OBJECTIVES: To report epidemiological trends in cerebral palsy including analyses by severity. DESIGN: Descriptive longitudinal study in north-east England. Every child with suspected cerebral palsy was examined by a developmental paediatrician to confirm the diagnosis. Severity of impact of disability was derived from a parent completed questionnaire already developed and validated for this purpose. SUBJECTS: All children with cerebral palsy, not associated with any known postneonatal insult, born 1964-1993 to mothers resident at the time of birth in the study area. MAIN OUTCOME MEASURES: Cerebral palsy rates by year, birth weight, and severity. Severity of 30% and above defines the more reliably ascertained cases; children who died before assessment at around 6 years of age are included in the most severe group (70% and above). RESULTS: 584 cases of cerebral palsy were ascertained, yielding a rate that rose from 1.68 per 1000 neonatal survivors during 1964-1968 to 2.45 during 1989-1993 (rise = 0.77; 95% confidence interval 0.2-1.3). For the more reliably ascertained cases there was a twofold increase in rate from 0.98 to 1.96 (rise = 0.98; 95% confidence interval 0.5-1.4). By birth weight, increases in rates were from 29.8 to 74.2 per 1000 neonatal survivors < 1500 g and from 3.9 to 11.5 for those 1500-2499 g. Newborns < 2500 g now contribute one half of all cases of cerebral palsy and just over half of the most severe cases, whereas in the first decade of this study they contributed one third of all cases and only one sixth of the most severe (chi(2) and chi(2) for trend p < 0.001). CONCLUSIONS: The rate of cerebral palsy has risen in spite of falling perinatal and neonatal mortality rates, a rise that is even more pronounced when the mildest and least reliably ascertained are excluded. The effect of modern care seems to be that many babies < 2500 g who would have died in the perinatal period now survive with severe cerebral palsy. A global measure of severity should be included in registers of cerebral palsy to determine a minimum threshold for international comparisons of rates, and to monitor changes in the distribution of severity.

The lifestyle assessment questionnaire: an instrument to measure the impact of disability on the lives of children with cerebral palsy and their families.

Suitable measures of health and morbidity are less readily available for children than they are for adults. We present a measure, which is used to describe the impact of impairment and disability on the lives of children with cerebral palsy and their families. The development of this measure involved data collected from 691 children with cerebral palsy contained within the North-East England Cerebral Palsy Register and born between 1960 and 1985. Uniquely, multidimensional scaling techniques were used to derive dimensions analogous with those described in the International Classification of Impairments, Disabilities, and Handicaps. We present the analyses undertaken to test the properties of the tool, which show that it is a reliable and valid measure of the disadvantages experienced by children with cerebral palsy.