Cerebral palsy is the most common cause of childhood-onset, lifelong physical disability in most countries, affecting about 1 in 500 neonates with an estimated prevalence of 17 million people worldwide. Cerebral palsy is not a disease entity in the traditional sense but a clinical description of children who share features of a non-progressive brain injury or lesion acquired during the antenatal, perinatal or early postnatal period. The clinical manifestations of cerebral palsy vary greatly in the type of movement disorder, the degree of functional ability and limitation and the affected parts of the body. There is currently no cure, but progress is being made in both the prevention and the amelioration of the brain injury. For example, administration of magnesium sulfate during premature labour and cooling of high-risk infants can reduce the rate and severity of cerebral palsy. Although the disorder affects individuals throughout their lifetime, most cerebral palsy research efforts and management strategies currently focus on the needs of children. Clinical management of children with cerebral palsy is directed towards maximizing function and participation in activities and minimizing the effects of the factors that can make the condition worse, such as epilepsy, feeding challenges, hip dislocation and scoliosis. These management strategies include enhancing neurological function during early development; managing medical co-morbidities, weakness and hypertonia; using rehabilitation technologies to enhance motor function; and preventing secondary musculoskeletal problems. Meeting the needs of people with cerebral palsy in resource-poor settings is particularly challenging.

The timed 'Up & Go' test (TUG) is a test of basic or functional mobility in adults which has rarely been used in children. Functional mobility was defined for this study as an individual's ability to manoeuvre his or her body capably and independently to accomplish everyday tasks. Reliability and validity of TUG scores were examined in 176 children without physical disabilities (94 males, 82 females; mean age 5y 9mo [SD 1y 8mo]; range 3 to 9y) and in 41 young people with physical disabilities due to cerebral palsy or spina bifida (20 males, 21 females; mean age 8y 11mo [SD 4y 3mo], range 3 to 19y). Mean TUG score for children without physical disability was 5.9s (SD 1.3). Reliability of the TUG test was high, with intraclass correlation coefficients (ICC) of 0.89 within session, and 0.83 for test-retest reliability. Mean score of the group aged 3 to 5 years was significantly higher (6.7s SD 1.2) than that of the older group (5.1s, SD 0.8; p=0.001). Scores in the younger group reduced significantly over a 5-month follow-up period (p=0.001), indicating that the TUG was responsive to change. Within-session reliability of the TUG in young people with disabilities was very high (ICC=0.99). There were significant differences in TUG scores between children classified at levels I, II, and III of the Gross Motor Function Classification System (p=0.001). TUG scores showed a moderate negative correlation with scores on the Standing and Walking dimensions of the Gross Motor Function Measure (n=22, rho=-0.52, p=0.012). There was no significant difference in TUG scores between typically developing male and female children. The TUG can be used reliably in children as young as 3 years using the protocol described in this paper. It is a meaningful, quick, and practical objective measure of functional mobility. With further investigation, the TUG is potentially useful as a screening test, an outcome measure in intervention studies for young people with disabilities, a measure of disability, and as a measure of change in functional mobility over time.

Hip displacement is common in children with cerebral palsy, with an overall incidence of 35% found in this study. The risk of hip displacement is directly related to gross motor function as graded with the Gross Motor Function Classification System. This information may be important when assessing the risk of hip displacement for an individual child who has cerebral palsy, for counseling parents, and in the design of screening programs and resource allocation.

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With an increasing number of paediatric quality of life (QOL) instruments being developed, it is becoming difficult for researchers and clinicians to select the most appropriate instrument. Reviews of QOL instruments tend to report only basic properties of the instruments such as domains and psychometric properties. This paper seeks to appraise critically the conceptual underpinnings of paediatric QOL instruments. A systematic review was conducted to identify QOL instruments for children aged 0 to 12 years, and to examine and compare their conceptual frameworks, definitions employed, and structure. Both generic and condition-specific measures were reviewed. Fourteen generic and 25 condition-specific QOL instruments were identified. Eleven types of definition of QOL and health-related QOL and three theories of QOL were identified. QOL was measured by a variety of domains including emotional, social and physical health, and well-being. Items commonly assessed difficulties, or intensity/frequency of feelings/symptoms, in contrast to positive aspects of life and happiness. The findings highlight the diversity that is apparent in the conceptualization of paediatric QOL and draw attention to the lack of empirical evidence for many of the fundamental assumptions. The impact of the conceptual underpinnings of the instruments on the resulting QOL scores is discussed.

This letter is commented on by Reid et al. on page 867-868 of this issue SIR-Reid et al. 1 reported on the long-term survival of persons with cerebral palsy in the Australian state of Victoria. They found that rates, predictors, and causes of mortality were in line with reports from other countries. They also found that 'contrary to expectation, no improvement in survival was seen over the 40 years of the study.' We wish to raise two issues, possibly related, regarding this last point.The first issue is methodological. The authors' approach was to identify four cohorts according to the decade of birth, the first being the 1970s and the fourth being the 2000s. The authors found no difference in the survival of these cohorts. There are several potential difficulties with this approach. By working with mortality of cohorts followed over several decades rather than with observed mortality in a specific calendar year, it does not answer the question of real interest: is mortality lower in later years -the year 2000, say -than it was in 1975? The children in the 1970s cohort, for example, may contribute data to all four decades. A better approach is to work directly with person-years, as in the California studies cited by the authors. 2,3A further methodological difficulty with the authors' approach is that it does not take into account the severity of disabilities, a factor known to be of critical importance to survival. Conceivably, for example, because of advances in neonatal medicine, more of the children with the most extreme disabilities survive infancy in the later decades than in the earlier decades. If that were the case then the comparison of birth cohorts would be biased, as the later cohorts would have a greater proportion of very fragile children. Once again, this problem could have been avoided with the use of the personyear approach.This brings us to the second issue, the use of gastrostomy feeding. The authors write: 'We did not present data on feeding, as tube feeding is an indicator that an individual has severe problems and a poor prognosis for survival, but it is also performed to improve survival and quality of life. ' We agree with the assertions in the second half of this sentence, but they scarcely constitute a reason to ignore the data on tube feeding. As is well known, the need for tube feeding is a powerful predictor of mortality and the use of gastrostomy feeding has become far more common in recent decades.2,3 It would therefore be important to take gastrostomy dependence into account, along with a measure of motor function, etc. when examining the mortality data for a possible trend over time.Had the authors taken a person-year approach that properly took account of motor function, gastrostomy dependence, etc. in addition to calendar year, they may have found improved survival over the decades. At the least, if they still did not observe such a trend it would represent much better evidence that it had not occurred.

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The VCPR is ideal for population-based studies of gross motor function in children with CP. Gross motor function is similar in populations of children with CP in developed countries but the comparison of motor types and topographical distribution is difficult because of lack of consensus with classification systems. Use of the GMFCS provides a valid and reproducible method for clinicians to describe gross motor function in children with CP using a universal language.