AIM To determine whether there is a difference between perspectives of functioning and healthrelated quality of life (HRQL) of parents and ambulatory adolescents with spastic cerebral palsy (CP). RESULTS Cross-sectional data, calculated with intraclass correlation coefficients [ICC], showed parents and adolescents agreed more on functioning (ICC=0.488-0.748) than HRQL (ICC=0.242-0.568; PODCI). Parents and adolescents both recognized significant comorbidities (ICC=0.502-0.713), but adolescents saw themselves as less limited (ICC=0.330) than parents. The greatest differences between parents and adolescents were in HRQL scales for male adolescents, with only a small part explained by GMFCS level difference between sexes (effect size 0.002-0.143). Age, parent well-being, and parent sex had little effect and comorbidities had no effect. GMFCS level was the most common predictor. INTERPRETATION Most scales on health conditions, function, and HRQL agreed between parentsand adolescents aged11 to 18 years. Parent proxy is reasonable when necessary, but assessing both parents and adolescents gives additional insight. Adolescents do not consider themselves as limited by health conditions as parents do; parents have greater satisfaction with current level of symptoms than adolescents, and findings vary on expectations for treatment.Cerebral palsy (CP) is the most common childhood congenital 'disorder of movement and posture causing activity limitation, attributed to non-progressive disturbances that occurred in the developing fetal or infant brain.' 1 CP affects 2 to 3 ⁄ 1000 children, 2 yet understanding of its impact upon function and quality of life (QOL) on children is limited. Davis et al. 3 noted the importance of a clear definition of terms when assessing outcomes, stating that 'functional status refers to what a child can do, whereas QOL refers to how a child feels.' QOL and health-related quality of life (HRQL) assessments evaluate subjective well-being, with QOL denoting holistic well-being, and HRQL health-related well-being. In recent years there has been discussion on whether parent, patient, or both should report on functioning and QOL in CP. [4][5][6][7][8][9][10][11][12][13][14][15] The current study was part of a Cerebral Palsy Longitudinal Assessment Database project (CPLAD) to assess functioning and HRQL in ambulatory children with CP. The null hypothesis stated there would be no difference in perceptions between parents and adolescents with CP, on the Pediatric Outcomes Data Collection Instrument (PODCI), assessing functioning and HRQL. If differences were noted, the intention was to highlight the contributing factors.A review by Guyatt et al. 16 found proxy versus patient evaluations of HRQL frequently showed about a 50% correlation, varying with the domains assessed and relationship of proxy. Proxy reports of more easily-observed domains (i.e. physical functioning, cognition) correlated more with patient reports. In general, patients reported higher function while proxies, especially close contacts, r...

ObjectivesWe previously reported a correlation between levels of microparticles carrying CD31 (PMP CD31+) and disease activity in MS. However, the effects of long term (12 month) treatment with high dose, high frequency interferon-β1a (Rebif™) on plasma levels of PMPCD31+, PMPCD146+, and PMPCD54+ and MRI measures of disease activity have not yet been assessed.MethodsDuring this prospective 1-year study, we used flow cytometry to measure changes in plasma microparticles (PMP) bearing CD31 (PMPCD31+), CD146 (PMPCD146+), and CD54/ICAM-1 (PMPCD54+) in 16 consecutive patients with relapsing-remitting MS (RRMS) before and after 3, 6, and 12 months of subcutaneous therapy with interferon-beta1a (44 micrograms, 3X weekly). At each visit, clinical exams and expanded disability status scale (EDSS) scores were recorded.ResultsPlasma levels of PMPCD31+, and PMPCD54+ were significantly reduced by treatment with IFN-β1a. PMPCD146+ appeared to decrease only at 3 months and did not persist at 6 and 12 months (p = 0.0511). In addition, the decrease in plasma levels of PMPCD31+ and PMPCD54+ levels at 12 months were associated with a significant decrease in the number and volume of contrast enhancing T1-weigthed lesions.ConclusionOur data suggest that serial measurement of plasma microparticles (PMP), particularly in the initial stages of MS (when neuro-inflammatory cascades are more intense), may serve as reliable and reproducible surrogate markers of response to IFN-β1a therapy for MS. In addition, the progressive decline in plasma levels of PMPCD31+ and PMPCD54+ further supports the concept that IFN-β1a exerts stabilizing effect on the cerebral endothelial cells during pathogenesis of MS.

Little data exists assessing the relationship between functional limitations in children with cerebral palsy (CP) and their participation in everyday activities. This prospective study evaluates the relationship between the Pediatric Outcomes Data Collection Instrument (PODCI), a functional healthrelated quality of life instrument for children and their parents, and the School Function Assessment (SFA), a school-based functional assessment. One hundred and two children with CP (80.4% dipliegia; 10.8% hemiplegia; 3.9% triplegia; 2.0% quadriplegia; 2.9% unspecified; 60 males, 42 females, mean age 11 years 8 months (SD 3y 3mo, range 6-8y), Gross Motor Function Classification System levels I to IV (13.7% Level I 50% Level II 35.3% Level III 1% Level IV), had complete PODCI and SFA assessments. Significant relationships were noted among multiple PODCI subscales and subscales of the SFA, as well as among individual questions. PODCI predicted performance in all 31 subscales of the SFA when comorbidity subscales were included (r =0.35-0.64). The PODCI in-clinic questionnaire provides an accurate reflection of the child's actual participation in the community setting, as assessed by the SFA. PODCI can reliably be used to help ensure that outcomes assessed in the clinic setting reflect function within the community, and can be used to help with treatment planning, goal setting, and improved patient care.'Functional health assessment determines what the patient is doing. It deals both with tasks (lifting, walking) and roles (student, shopkeeper, dock worker). It measures the quality of life.', p.683.1 Treatments may act measurably in the body structure and function dimension by changing the musculoskeletal system, but we must demonstrate positive effects in what the child does in everyday life (participation). Goldberg notes, 'Functional health status should record how the unobserved child with cerebral palsy (CP) proceeds from one location to another quickly, efficiently, and with minimal energy expenditure.', p.683-684. He also notes that for adults with CP, the first needs are communication skills, followed by selfcare activities of daily living (ADL), and then locomotion or mobility (not necessarily ambulation).