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

Reliability and validity of the RS14 in orphaned and separated adolescents and youths in western Kenya

Purpose: The 14-item Resilience Scale (RS14) is a tool designed to measure psychological resilience. It has been used effectively in diverse populations. However, its applicability is largely unknown for Sub-Saharan adolescent populations and completely unknown for orphaned and separated adolescents and youths (OSAY), a highly vulnerable population for whom resilience may be critical. This study assesses the RS14\u27s psychometric properties for OSAY in Uasin Gishu County, Kenya. Methods: Survey responses from a representative sample of 1016 OSAY (51.3% female) aged 10-25 (mean = 16; SD = 3.5) living in institutional and home-based environments in Uasin Gishu County were analyzed. The RS14\u27s psychometric properties were assessed by examining internal consistency reliability, confirmatory factor analyses, and convergent validity using correlations between resilience and each of social support and depression. Sub-analyses were conducted by age and sex. Results: Resilience scores ranged from 14-98 (mean = 66; SD = 19) with no sex-based significant difference. Resilience was higher for those aged ≥18 (mean = 69; range = 14-98) versus age \u3c18 (mean = 65; range = 14-98). Internal consistency was good (Cronbach\u27s α = .90). Confirmatory factor analysis indicated a 1-factor solution, though the model fit was only moderate. Resilience was positively correlated with social support in all ages (.22; p \u3c .001) and negatively correlated with depression in individuals age \u3c18 (-.22; p \u3c .001). The relationship between resilience and depression in individuals age ≥18 was statistically significant only in females (-.17; p = .026). Conclusion: This study demonstrates reasonable evidence that the RS14 is both valid and reliable for measuring psychological resilience in the population of OSAY in western Keny

The relationships between resilience, care environment, and social-psychological factors in orphaned and separated adolescents in Western Kenya

The relationships between care environment, resilience, and social factors in orphaned and separated adolescents and youths (OSAY) in western Kenya are complex and under-studied.Survey responses from OSAY living in Charitable Children’s Institutes (CCI) and family-based care settings (FBS) in Uasin Gishu County, Kenya were used to examine the associations between 1) care environment and resilience; 2) care environment and factors thought to promote resilience (e.g. social, family, and peer support); and 3) resilience and these same resilience-promoting factors, using multivariable linear and logistic regressions. This cross-sectional study included 1202 OSAY (50.4% female) aged 10–26 (mean = 16; SD = 3.5). The mean resilience score in CCIs was 71 (95%CI = 69–73) vs. 64 (95%CI = 62–66) in FBS. OSAY in CCIs had higher resilience (β = 7.67; 95%CI = 5.26–10.09), social support (β = 0.26; 95%CI = 0.14–0.37), and peer support (β = 0.90; 95%CI = 0.64–1.17) than those in FBS. OSAY in CCIs were more likely to volunteer than those in FBS (OR = 3.72; 95%CI = 1.80–7.68), except in the male subgroup. Family (β = 0.42; 95%CI = 0.24–0.60), social (β = 4.19; 95%CI = 2.53–5.85), and peer (β = 2.13; 95%CI = 1.44–2.83) relationships were positively associated with resilience in all analyses. Volunteering was positively associated with resilience (β = 5.85; 95%CI = 1.51–10.19). The factor most strongly related to resilience in both fully adjusted models was peer support. This study found a strong relationship between care environment and resilience. Care environment and resilience each independently demonstrated strong relationships with peer support, social support, and participating in volunteer activities. Resilience also had a strong relationship with familial support. These data suggest that resilience can be developed through strategic supports to this vulnerable population

Trial Designs Likely to Meet Valid Long-Term Alzheimer's Disease Progression Effects: Learning from the Past, Preparing for the Future

The International Society for CNS Clinical Trials and Methodology (ISCTM) held its 4th Annual Autumn Conference in Toronto, Ontario, October 6-7, 2008. The purpose of the present report is to provide an overview of one of the sessions at the conference which focused on the designs and methodologies to be applied in clinical trials of new treatments for Alzheimer's disease (AD) with purported “disease-modifying” effects. The session began with a discussion of how neuroimaging has been applied in multiple sclerosis clinical trials (another condition for which disease modification claims have been achieved). The next two lectures provided a pharmaceutical industry perspective on some of the specific challenges and possible solutions for designing trials to measure disease progression and/or modification. The final lecture provided an academic viewpoint and the closing discussion included additional academic and regulatory perspectives on trial designs, methodologies, and statistical issues relevant to the disease modification concept

The At Home/Chez Soi trial protocol: a pragmatic, multi-site, randomised controlled trial of a Housing First intervention for homeless individuals with mental illness in five Canadian cities

This article was published in BMJ Open following peer review and can also be viewed on the journal’s website at http://bmjopen.bmj.comIntroduction: Housing First is a complex housing and support intervention for homeless individuals with mental health problems. It has a sufficient knowledge base and interest to warrant a test of wide-scale implementation in various settings. This protocol describes the quantitative design of a Canadian five city, $110 million demonstration project and provides the rationale for key scientific decisions. Methods: A pragmatic, mixed methods, multi-site field trial of the effectiveness of Housing First in Vancouver, Winnipeg, Toronto, Montreal and Moncton, is randomising approximately 2500 participants, stratified by high and moderate need levels, into intervention and treatment as usual groups. Quantitative outcome measures are being collected over a 2-year period and a qualitative process evaluation is being completed. Primary outcomes are housing stability, social functioning and, for the economic analyses, quality of life. Hierarchical linear modelling is the primary data analytic strategy. Ethics and dissemination: Research ethics board approval has been obtained from 11 institutions and a safety and adverse events committee is in place. The results of the multi-site analyses of outcomes at 12 months and 2 years will be reported in a series of core scientific journal papers. Extensive knowledge exchange activities with non-academic audiences will occur throughout the duration of the project.This work was supported by a contract from Health Canada administrated by the Mental Health Commission of Canada