Peter Rosenbaum

THE GROSS MOTOR FUNCTION MEASURE: A MEANS TO EVALUATE THE EFFECTS OF PHYSICAL THERAPY

This paper reports the results of a study to validate a measure of gross motor function in detecting change in the motor function of disabled children. Physiotherapists used this instrument to assess 111 patients with cerebral palsy, 25 with head injury and 34 non‐disabled preschool children on two occasions, the second after an interval of four to six months. Parents and therapists independently rated the childrens function within two weeks of each assessment, and a sample of paired assessments was videotaped for ‘blind’ evaluation by therapists. Correlations between scores for change on this measure and the judgments of change by parents, therapists and ‘blind’ evaluators supported the hypothesis that the instrument would be responsive to both negative and positive changes.

Comparison of the health-related quality of life of extremely low birth weight children and a reference group of children at age eight years

OBJECTIVES To estimate and compare the health-related quality of life (HRQOL) of extremely low birth weight (ELBW) children and a reference group of children at age 8 years. DESIGN The study utilized a utility equation from preference measures derived from a random sample of 194 general-population parents surveyed in 1987. This equation was applied to multiattribute health state descriptions of the study participants. Utilities can be used to estimate a single cardinal value between 0.0 and 1.0 (0 = dead; 1 = perfect health) to reflect the global HRQOL for that individual. SETTING Geographically defined region in central-west Ontario, Canada. PARTICIPANTS One hundred fifty-six ELBW survivors born between 1977 and 1982, and 145 reference children from the general population, matched for age, sex, and socioeconomic status to the index cases. RESULTS Mean HRQOL scores were lower for ELBW (0.82, SD 0.21) than for reference group (0.95, SD 0.07; p < 0.0001). The ELBW group had greater variability in HRQOL scores (p < 0.001), and the distribution was such that 50% of ELBW children but only 10% of the reference group had scores < 0.88. Only 14% of ELBW children were assigned HRQOL scores of 1.0, compared with 50% of reference subjects (p < 0.0001). CONCLUSIONS These results demonstrate that from the perspective of the general population, the overall long-term burden experienced by ELBW children is greater than that for reference children. The methods used to assess HRQOL have wide applicability for evaluation of different treatment programs.

Comprehensive assessment of the health status of extremely low birth weight children at eight years of age: Comparison with a reference group

OBJECTIVE To apply a multiattribute health status (MAHS) classification system to data available on two cohorts of school-aged children to describe several dimensions of health simultaneously. The MAHS system describes both the type and severity of functional limitations according to seven attributes: sensation, mobility, emotion, cognition, self-care, pain, and fertility (fertility not applicable in this study), with four or five levels of function within each attribute. DESIGN The MAHS system was applied retrospectively to clinical and psychometric data collected prospectively at age 8 years. MAHS application was by selection of items from the database and development of computer-assisted algorithms to assign functional levels within each attribute. SETTING Geographically defined region in central-west Ontario, Canada. PARTICIPANTS One hundred fifty-six extremely low birth weight (ELBW) survivors born between 1977 and 1982 (follow-up rate 90%) and 145 reference children matched for age, sex, and socioeconomic status. RESULTS 14% of ELBW subjects had no functional limitations, 58% had reduced function for one or two attributes, and 28% had at least three affected. The corresponding figures for the reference group were 50%, 48%, and 2% (p < 0.0001). The limitations were more severe and complex in the ELBW group, and were notably in cognition (58%), sensation (48%), mobility (21%), and self-care (17%), compared with 28%, 11%, 1%, and 0% for reference children (all p < 0.0001). CONCLUSIONS These data indicate that fewer ELBW than reference children were free of functional limitations and a significantly higher proportion had multiple attributes affected. The MAHS classification approach is a useful instrument to compare the health status of different groups and populations, and to monitor changes with time.

The ICF model of functioning and disability: incorporating quality of life and human development.

Objective: Since its 2001 publication, a number of issues have been raised about the ICF. The World Health Organization anticipated the ICF would undergo a continuous process of revision. This paper adds to this process. Method: This article describes how the ICF framework shares a number of tenets with a systems perspective. An argument is built for why the ICF model of functioning and disability should be expanded to include the concepts of quality of life and human development. A modified model is presented that depicts a persons life quality and his/her potential for development as the outcomes and processes that arise from the interconnected, ever-changing influences of health, functioning and contextual factors. Conclusions: A modified ICF model based on a systems perspective depicts a holistic view that acknowledges health, functioning, life quality and development are intertwined and are essential concepts to consider in the lives of all people.

Corrected and uncorrected Bayley scores: Longitudinal developmental patterns in low and high birth weight preterm infants

Abstract In this study, we longitudinally investigated developmental changes in very low birth weight (VLBW, less than 1500 gms), in higher birth weight (HBW, 1500–2000 gms) preterm, and in full-term (FT) infants. We also investigated changes in their caretaking home environment. The subjects were 20 VLBW, 39 HBW, and 24 FT infants who participated in an intervention study. Blind independent assessments were performed at 4, 8, 12, and 16 months corrected age using the Bayley mental and motor scales, both corrected for prematurity and uncorrected, the Infant and Toddler temperament questionnaires, and the Caldwell Home Observation for Measurement of the Environment inventory (HOME). The VLBW infants obtained the lowest mental (77) and motor (77) uncorrected scores, which were significantly different from the mental and motor scores of the HBW (94 and 89, respectively) and of the FT (115 and 109, respectively) infants. Mental and motor uncorrected scores were significantly lower at 4 months than at 8, 12, and 16 months. By 12 months, the uncorrected scores of the HBW infants no longer differed from the FT ones, and by 16 months only the difference between the FT and the VLBW was significant. The corrected mental and motor scores yielded no significant group or age differences. Post hoc analysis of an interaction in the motor scores yielded significantly higher scores for the FT than for the VLBW group at the last assessment. Overall, the VLBW infants were more passive and less intense than were either HBW or FT infants. In general, the home environment of the VLBW infants was significantly less stimulating and responsive than was the home environment of the FT and HBW infants. These results are discussed in terms of vulnerability of the VLBW preterm infants to developmental deficits and the difficulties their parents experience in their caretaking role.

A RANDOMIZED CONTROLLED TRIAL OF A ‘BUDDY’ PROGRAMME TO IMPROVE CHILDREN'S ATTITUDES TOWARD THE DISABLED

Childrens attitudes to their disabled peers exert a powerful influence on the process of integration of the disabled. This study reports a randomized controlled trial of a ‘buddy’ interaction programme in which gender‐matched able‐bodied and disabled schoolmates were paired over a three‐month period. 43 per cent of the buddy children had a significant improvement in attitudes, compared with 18 per cent of the controls. Buddies also got to know significantly more disabled schoolmates than did the control children. There was a secondary effect on parents, with both fathers and mothers of buddy children having significant improvements in attitude. The implications of these results for the social success of disabled children are discussed.

Home or children's treatment centre: where should initial therapy assessments of children with disabilities be done?

Following developmental paediatric consultation at a child development clinic, 50 preschool children newly referred for a developmental rehabilitation programme were assigned randomly for initial therapist assessments at home or at the clinic. It was thought that children would perform more typically at home, that therapists would be able to observe more of the childrens usual functions, and that parents would feel more satisfied. Despite several minor statistically significant differences between the two venues, there was no obvious advantage of home evaluation over clinic assessment. However, the added cost of home assessments was marginal, and there may still be some value in seeing young disabled children for first assessment in their own homes.