A method is derived to calculate the amount by which a subject's gait deviates from an average normal profile, and to represent this deviation as a single number. The method uses principal component analysis to derive a set of 16 independent variables from 16 selected gait variables. The sum of the square of these 16 independent variables is interpreted as the deviation of the subject's gait from normal. Statistical tests of the method's validity and an initial demonstration of its clinical utility are included. It is found that using this index, increasing clinical involvement corresponds to increasing index score.
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.
BackgroundPrimary care medical homes may improve health outcomes for children with special healthcare needs (CSHCN), by improving care coordination. However, community-based primary care practices may be challenged to deliver comprehensive care coordination to complex subsets of CSHCN such as children with medical complexity (CMC). Linking a tertiary care center with the community may achieve cost effective and high quality care for CMC. The objective of this study was to evaluate the outcomes of community-based complex care clinics integrated with a tertiary care center.MethodsA before- and after-intervention study design with mixed (quantitative/qualitative) methods was utilized. Clinics at two community hospitals distant from tertiary care were staffed by local community pediatricians with the tertiary care center nurse practitioner and linked with primary care providers. Eighty-one children with underlying chronic conditions, fragility, requirement for high intensity care and/or technology assistance, and involvement of multiple providers participated. Main outcome measures included health care utilization and expenditures, parent reports of parent- and child-quality of life [QOL (SF-36®, CPCHILD©, PedsQL™)], and family-centered care (MPOC-20®). Comparisons were made in equal (up to 1 year) pre- and post-periods supplemented by qualitative perspectives of families and pediatricians.ResultsTotal health care system costs decreased from median (IQR) $244 (981) per patient per month (PPPM) pre-enrolment to $131 (355) PPPM post-enrolment (p=.007), driven primarily by fewer inpatient days in the tertiary care center (p=.006). Parents reported decreased out of pocket expenses (p<.0001). Parental QOL did not significantly change over the course of the study. Child QOL improved between baseline and 6 months in two PedsQL™ domains [Social (p=.01); Emotional (p=.003)], and between baseline and 1 year in two CPCHILD© domains [Health Standardization Section (p=.04); Comfort and Emotions (p=.03)], while total CPCHILD© score decreased between baseline and 1 year (p=.003). Parents and providers reported the ability to receive care close to home as a key benefit.ConclusionsComplex care can be provided in community-based settings with less direct tertiary care involvement through an integrated clinic. Improvements in health care utilization and family-centeredness of care can be achieved despite minimal changes in parental perceptions of child health.
Background:Existing radiographic classification schemes (eg, Tönnis criteria) for DDH quantify the severity of disease based on the position of the ossific nucleus relative to Hilgenreiner’s and Perkin’s lines. By definition, this method requires the presence of an ossification centre, which can be delayed in appearance and eccentric in location within the femoral head. A new radiographic classification system has been developed by the International Hip Dysplasia Institute (IHDI), which uses the mid-point of the proximal femoral metaphysis as a reference landmark, and can therefore be applied to children of all ages. The purpose of this study was to compare the reliability of this new method with that of Tönnis, as the first step in establishing its validity and clinical utility.Methods:Twenty standardized anteroposterior pelvic radiographs of children with untreated DDH were selected purposefully to capture the spectrum of age (range, 3 to 32 mo) at presentation and disease severity. Each of the hips was classified separately by the IHDI and Tönnis methods by 6 experienced pediatric orthopaedists from the United States, Canada, Mexico, United Kingdom, and by 2 orthopaedic senior residents. The inter-rater reliability was tested using the Intra Class Correlation coefficient (ICC) to measure concordance between raters.Results:All 40 hips were classifiable by the IHDI method by all raters. Ten of the 40 hips could not be classified by the Tönnis method because of the absence of the ossific nucleus on one or both sides. The ICC (95% confidence interval) for the IHDI method for all raters was 0.90 (0.83-0.95) and 0.95 (0.91-0.98) for the right and left hips, respectively. The corresponding ICCs for the Tönnis method were 0.63 (0.46-0.80) and 0.60 (0.43-0.78), respectively. There was no significant difference between the ICCs of the 6 experts and 2 trainees.Conclusions:The IHDI method of classification has excellent inter-rater reliability, both among experts and novices, and is more widely applicable than the Tönnis method as it can be applied even when the ossification centre is absent.Level of Evidence:Level II (diagnostic).
Flexible intramedullary nailing has become a popular method of fixation of pediatric femoral fractures. The authors analyzed their first 5-year experience with titanium elastic stable intra-medullary nailing, specifically to report the complications associated with this technique and to provide recommendations to avoid these complications. Seventy-eight children with 79 femoral fractures were treated by this method. Complications included pain/irritation at the insertion site (41), radiographic malunion (8), refracture (2), transient neurologic deficit (2), and superficial wound infection (2). Ten patients required reoperation prior to union. Malunion and/or loss of reduction requiring reoperation was strongly associated with the use of nails of mismatched diameters (odds ratio = 19.4) and comminution of more than 25% (odd ratio = 5.5). Pain at the insertion site was significantly associated with bent or prominent nail ends. Most complications are minor, and many are preventable. Surgeons should advance nail ends to lie against the supracondylar flare of the femur to avoid symptoms at the insertion site and should avoid implanting nails of two different diameters. Comminuted fractures should be monitored carefully and might benefit from additional immobilization.
The Gait Outcomes Assessment List (GOAL) can discriminate between Gross Motor Function Classification System levels. The GOAL correlates with standard functional assessments and gait analysis. Used with gait analysis, the GOAL provides comprehensive assessment across all International Classification of Functioning, Disability and Health domains.
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.
RESULTS Three hundred and forty-four participants were approached and 87% (n=300) participated. Sufficient data were available on 248 (72% of total sample). Sixty-six participants (27%) formed the pain group with HUI3 pain scores of at least 3. The presence of pain and increasing age significantly negatively predicted HRQOL (p<0.001, R 2 =0.141), while GMFCS and sex did not. Musculoskeletal deformity (24%) and hypertonia (18%) were the most frequent pain causes. HRQOL statistically differed depending on the pain etiology (p=0.028) with musculoskeletal deformity showing the lowest mean HRQOL. INTERPRETATIONThe presence of pain and increasing age negatively predict HRQOL in CP. musculoskeletal deformity has the greatest negative impact on HRQOL.Quality of life refers to an 'individuals´ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns'.1 Health-related quality of life (HRQOL) takes a holistic view of well-being, encompassing physical, social, and psychological wellbeing. It is a multidimensional construct based on an individual's subjective evaluation of his/her function and therefore differs from quality of life where individuals can evaluate their life regardless of impairments and function. While individuals with severe disabilities can maintain high HRQOL, 3 several studies have shown that children and adolescents with cerebral palsy (CP) have lower HRQOL scores compared to typically developing peers. 4,5 Studies have sought to determine the factors that influence HRQOL for children with CP. The presence of pain has consistently been identified as an important factor negatively affecting HRQOL. 6,7 The Study of Participation of Children with Cerebral Palsy Living in Europe (SPAR-CLE) identified that pain was associated with lower scores across all HRQOL domains in children with CP aged 8 to 12 years. 7 The impact of age and sex on HRQOL in children and adolescents with CP is more variable. Age did not impact HRQOL for individuals with CP across the ages of 6 to 30 years 8 and 11 to 17 years 4 in two independent studies. In contrast, older adolescents (8-16y) with chronic conditions including CP reported lower emotional well-being scores compared with younger children. 9 In the same study, females were found to have lower emotional well-being than males. 9 This sex difference in HRQOL was not seen in a different study involving adolescents with CP.4 Gross motor function categorized by the Gross Motor Function Classification System (GMFCS) 10 has been associated with lower HRQOL in several studies. 4,5,7 Studies have investigated the relationship of age, GMFCS and/or sex with pain in children with CP. The SPARCLE study identified that older children reported more pain than younger children.11 Likewise, another study found that older age (>14y) predicted the presence of musculoskeletal pain.12 A positive association between severity of motor impairment (GMFCS level) and parentreported pain ...
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