This paper reports the development and validation of a disease-specific measure of health status and well-being of children with severe cerebral palsy (CP). The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) was constructed from recommendations from caregivers, healthcare providers, and review of other measures. Items spanning six domains are rated on an ordinal scale. Standardized scores (0-100) are reported for each domain and in total. Primary caregivers (n = 77) of 45 males and 32 females between 5 and 18 years of age (mean age 13 y 5 mo [SD 3 y 4 mo]) with CP, categorized by the Gross Motor Function Classification System (GMFCS) level, completed the CPCHILD. Caregivers of children with severe CP (GMFCS Levels IV and V) also completed a second administration of the CPCHILD 2 weeks after the first. The mean CPCHILD score for children with severe CP was 56.2 (SD 15.7; range 24-93). The mean CPCHILD scores for children in GMFCS Levels I to V were 22.0, 38.2, 23.0, 44.5, and 59.3 respectively (p < 0.001). Reliability was tested in 41/52 caregivers who reported no change in health status between the two administrations of the CPCHILD. The intraclass correlation coefficient was 0.94 (95% confidence interval 0.90-0.97). The CPCHILD seems to be a reliable and valid measure of caregivers' perspectives on the health status, functional limitations, and well-being of these children.
This paper reports the development and validation of a disease-specific measure of health status and well-being of children with severe cerebral palsy (CP). The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) was constructed from recommendations from caregivers, healthcare providers, and review of other measures. Items spanning six domains are rated on an ordinal scale. Standardized scores (0-100) are reported for each domain and in total. Primary caregivers (n=77) of 45 males and 32 females between 5 and 18 years of age (mean age 13y 5mo [SD 3y 4mo]) with CP, categorized by the Gross Motor Function Classification System (GMFCS) level, completed the CPCHILD. Caregivers of children with severe CP (GMFCS Levels IV and V) also completed a second administration of the CPCHILD 2 weeks after the first. The mean CPCHILD score for children with severe CP was 56.2 (SD 15.7; range 24-93). The mean CPCHILD scores for children in GMFCS Levels I to V were 22.0, 38.2, 23.0, 44.5, and 59.3 respectively (p<0.001). Reliability was tested in 41/52 caregivers who reported no change in health status between the two administrations of the CPCHILD. The intraclass correlation coefficient was 0.94 (95% confidence interval 0.90-0.97). The CPCHILD seems to be a reliable and valid measure of caregivers' perspectives on the health status, functional limitations, and well-being of these children.a Caregiver column provides sex distribution of respective caregivers for children at each Gross Motor Function Classification System (GMFCS) 17 level. One-Day Training Workshop 9.30am -4.30pmTrainer: Betty Hutchon Course fee: £80 Monday 16 October 2006, @ the Royal Free Hospital, LondonThis one-day workshop will introduce course participants to the Bayley-IIl. It will include an overview of the subtests, a broad look at the changes from BSID II, research design, psychometric properties, and special group studies. The Cognitive Scale, Language Scale, Motor Scale, Social-Emotional, and Adaptive Behaviour Scales will all be discussed. Administration and scoring procedures will be described and interpretative considerations discussed. The workshop is aimed at paediatric therapists, psychologists, paediatricians, and others responsible for assessing child development, who meet the criteria for a CL2 registration code with Harcourt Assessment.A certificate will be issued on completion of the training day.
The Ponseti method of clubfoot management requires a period of bracing in order to maintain correction. This study compared the effectiveness of ankle foot orthoses and Denis Browne boots and bar in the prevention of recurrence following successful initial management. Between 2001 and 2003, 45 children (69 feet) with idiopathic clubfeet achieved full correction following Ponseti casting with or without a tenotomy, of whom 17 (30 clubfeet) were braced with an ankle foot orthosis while 28 (39 clubfeet) were prescribed with Denis Browne boots and bar. The groups were similar in age, gender, number of casts and tenotomy rates. The mean follow-up was 60 months (50 to 72) in the ankle foot orthosis group and 47 months (36 to 60) in the group with boots and bars. Recurrence requiring additional treatment occurred in 25 of 30 (83%) of the ankle foot orthosis group and 12 of 39 (31%) of the group with boots and bars (p < 0.001). Additional procedures included repeat tenotomy (four in the ankle foot orthosis group and five in the group treated with boot and bars), limited posterior release with or without tendon transfers (seven in the ankle foot orthosis group and two in the group treated with boots and bars), posteromedial releases (nine in the orthosis group) and midfoot osteotomies (five in the orthosis group, p < 0.001). Following initial correction by the Ponseti method, children managed with boots and bars had far fewer recurrences than those managed with ankle foot orthoses. Foot abduction appears to be important to maintain correction of clubfeet treated by the Ponseti method, and this cannot be achieved with an ankle foot orthosis.
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