Health-related quality of life in childhood epilepsy: Moving beyond 'seizure control with minimal adverse effects'

Childhood epilepsy is one of the most important and prevalent neurological conditions in the developing years. Persons with childhood onset epilepsy are at a high risk for poor psychosocial outcomes, even without experiencing co-morbidities. The goal of management of children with epilepsy should be to enable the child and the family to lead a life as free as possible from the medical and psychosocial complications of epilepsy. This comprehensive care needs to go beyond simply trying to control seizures with minimal adverse drug reactions. Seizure frequency and severity is only one important outcome variable. Other factors such as social, psychological, behavioural, educational, and cultural dimensions of their lives affect children with epilepsy, their families and their close social networks. A number of epilepsy-specific health-related quality of life (HRQL) scales for children have been developed with the aim to include and measure accurately the impact and burden of epilepsy. Their target populations, details of the origin of the items, and psychometric properties vary significantly. Their strengths and weaknesses will be identified more clearly through their continued use in the clinical setting and in research studies. Only a few studies to date have utilized these or generic HRQL measures to assess the HRQL of specific populations with epilepsy. Future research needs to develop theory driven models of HRQL and identify measurable factors that have important correlations with outcomes. Since biomedical variables like seizure frequency and severity have only moderate correlations with HRQL, other independent factors including the child's resilience, co-morbid conditions, parental well-being, family factors and societal/cultural variables may play a major role. We also need to learn what encompasses comprehensive patient care, define the goals of management and evaluate the impact of different interventions. Future studies need to include the children's own perspectives of their HRQL in addition to parental reports. Finally, clinicians need to familiarize themselves with outcome measures, be able to evaluate them, and use them routinely in their day-to-day practice

Determinants of gross motor function of young children with cerebral palsy: A prospective cohort study

Aim: The aim of this study was to test a model of determinants of gross motor function of young children with cerebral palsy (CP). Method: Four hundred and twenty-nine children with CP (242 males, 187 females; mean age 3y 2mo, SD 11mo) representing all levels of the Gross Motor Function Classification System (GMFCS) participated. Children in levels I to II and III to V were classified as Groups 1 and 2 respectively. Distribution of CP was quadriplegia, 44%; hemiplegia, 24%; diplegia, 23%; triplegia, 6%; and monoplegia, 2% (data not available for 1%). Impairment and motor function data were collected by reliable assessors; parents completed questionnaires on health conditions and adaptive behavior. Seven months later, parents were interviewed about family life and services received. One year after the study onset, motor function was re-evaluated. Analysis involved structural equation modeling. Results: The well-fitting model explained 58% and 75% of the variance in motor function at study completion for Groups 1 and 2 respectively. Primary impairments (spasticity, quality of movement, postural stability, and distribution of involvement; β=0.52-0.68) and secondary impairments (strength, range of motion limitations, and reduced endurance; β=0.25-0.26) explained the most variance. Adaptive behavior was a significant determinant only for Group 2 (β=0.21) and participation in community programs was significant only in Group 1 (β=0.13). Interpretation: Motor function is supported by optimizing body structures and function for all children and enhancing adaptive behavior for children with greater motor challenges. © 2013 Mac Keith Press

Conceptualizing childhood health problems using survey data: a comparison of key indicators

<p>Abstract</p> <p>Background</p> <p>Many definitions are being used to conceptualize child health problems. With survey data, commonly used indicators for identifying children with health problems have included chronic condition checklists, measures of activity limitations, elevated service use, and health utility thresholds. This study compares these different indicators in terms of the prevalence rates elicited, and in terms of how the subgroups identified differ.</p> <p>Methods</p> <p>Secondary data analyses used data from the National Longitudinal Survey of Children and Youth, which surveyed a nationally representative sample of Canadian children (n = 13,790). Descriptive analyses compared healthy children to those with health problems, as classified by any of the key indicators. Additional analyses examined differences between subgroups of children captured by a single indicator and those described as having health problems by multiple indicators.</p> <p>Results</p> <p>This study demonstrates that children captured by any of the indicators had poorer health than healthy children, despite the fact that over half the sample (52.2%) was characterized as having a health problem by at least one indicator. Rates of child ill health differed by indicator; 5.6% had an activity limitation, 9.2% exhibited a severe health difficulty, 31.7% reported a chronic condition, and 36.6% had elevated service use. Further, the four key indicators captured different types of children. Indicator groupings differed on child and socio-demographic factors. Compared to children identified by more than one indicator, those identified only by the severe health difficulty indicator displayed more cognitive problems (p < 0.0001), those identified only by the chronic condition checklist had a greater likelihood of reporting allergies or asthma (p < 0.0001), and those identified as having elevated service use only were more affluent (p = 0.01) and showed better overall health (p < 0.0001). Children identified by only a single indicator were less likely to have serious health problems than those identified by two or more indicators.</p> <p>Conclusion</p> <p>We provide information useful to researchers when selecting indicators from survey data to identify children with health problems. Researchers and policy makers need to be aware of the impact of such definitions on prevalence rates as well as on the composition of children classified as being in poor health.</p

A Pilot Study of Nuclear Instability in Archived Renal and Upper Urinary Tract Tumours with Putative Ochratoxin Aetiology

DNA ploidy measurement has been applied uniquely to wax-embedded tissue of primary renal cell and metastatic tumours of a key experimental researcher on porcine ochratoxicosis, a control, and four transitional cell carcinomas from cases of Balkan endemic nephropathy. Primary renal tumour was diploid, and hyperdiploid metastasis was within the lower ploidy range for typical renal cell carcinoma. Three Balkan primary tumours showed extensive aneuploidy indicating marked nuclear instability, similar to model rat renal carcinoma caused by ochratoxin A. In contrast, much less nuclear instability in the putative occupational ochratoxicosis case fitted poorly with the ochratoxin A model

Quality of life among adolescents with cerebral palsy: what does the literature tell us?

Developmental Medicine & Child Neurology, 49(3): pp. 225-231.This review describes trends in quality of life (QOL) and health-related quality of life (HRQOL) among adolescents with cerebral palsy (CP). Twenty original articles were identified by a structured search of multiple databases and grouped by design. Categories included descriptive crosssectional studies (n=8), measurement validation studies (n=9), and exploratory qualitative studies (n=3). Several trends were apparent. First, individuals with CP are reported to have decreased QOL and HRQOL compared with a normative population in some but not all areas of well-being. Second, functional status measures such as the Gross Motor Function Classification System are reliable indicators of variations in physical function, but do not correlate consistently with psychosocial well-being. Third, although adolescents with CP have different life issues than adults or children, limited research on factors associated with QOL and HRQOL has been described for this age range. We recommend that clinicians and researchers interested in assessing well-being among adolescents with CP include participants from across the spectrum of motor impairment, allow adolescents to self-report whenever possible, and assess adolescents independently, rather than including them with individuals from other age groups or clinical populations

An Introduction to Propensity Score Methods for Reducing the Effects of Confounding in Observational Studies

The propensity score is the probability of treatment assignment conditional on observed baseline characteristics. The propensity score allows one to design and analyze an observational (nonrandomized) study so that it mimics some of the particular characteristics of a randomized controlled trial. In particular, the propensity score is a balancing score: conditional on the propensity score, the distribution of observed baseline covariates will be similar between treated and untreated subjects. I describe 4 different propensity score methods: matching on the propensity score, stratification on the propensity score, inverse probability of treatment weighting using the propensity score, and covariate adjustment using the propensity score. I describe balance diagnostics for examining whether the propensity score model has been adequately specified. Furthermore, I discuss differences between regression-based methods and propensity score-based methods for the analysis of observational data. I describe different causal average treatment effects and their relationship with propensity score analyses

Evaluation Research and Institutional Pressures: Challenges in Public-Nonprofit Contracting

This article examines the connection between program evaluation research and decision-making by public managers. Drawing on neo-institutional theory, a framework is presented for diagnosing the pressures and conditions that lead alternatively toward or away the rational use of evaluation research. Three cases of public-nonprofit contracting for the delivery of major programs are presented to clarify the way coercive, mimetic, and normative pressures interfere with a sound connection being made between research and implementation. The article concludes by considering how public managers can respond to the isomorphic pressures in their environment that make it hard to act on data relating to program performance.This publication is Hauser Center Working Paper No. 23. The Hauser Center Working Paper Series was launched during the summer of 2000. The Series enables the Hauser Center to share with a broad audience important works-in-progress written by Hauser Center scholars and researchers

Quality of life and health-related quality of life of adolescents with cerebral palsy

Developmental Medicine & Child Neurology, 49(7): pp. 516-521.This study assessed quality of life (QOL) and health-related quality of life (HRQOL) of 203 adolescents with cerebral palsy (111 males, 92 females; mean age 16y [SD 1y 9mo]). Participants were classified using the Gross Motor Function Classification System (GMFCS), as Level I (n=60), Level II (n=33), Level III (n=28), Level IV (n=50), or Level V (n=32). QOL was assessed by self (66.5%) or by proxy (33.5%) with the Quality of Life Instrument for People With Developmental Disabilities, which asks about the importance and satisfaction associated with the QOL domains of Being, Belonging, and Becoming; HRQOL was captured through proxy reports with the Health Utilities Index, Mark 3 (HUI3), which characterizes health in terms of eight attributes, each having five or six ordered levels of function. GMFCS level was not a source of variation for QOL domain scores but was significantly associated with the eight HRQOL attributes and overall HUI3 utility scores (p<0.05). Some QOL domain scores varied significantly by type of respondent (self vs proxy; p<0.05). Overall HUI3 utility values were significantly but weakly correlated with QOL Instrument scores for Being (r=0.37), Belonging (r=0.17), Becoming (r=0.20), and Overall QOL (r=0.28), and thus explain up to 14% of the variance (r2). These findings suggest that although QOL and HRQOL are somewhat related conceptually, they are different constructs and need to be considered as separate dimensions of the lives of people with functional limitations