Validity of the 12-item World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) in individuals with Huntington disease (HD).

PURPOSE: The reliability and construct validity of the 12-item World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) were examined in individuals with Huntington disease (HD). METHODS: We examined factor structure (confirmatory factor analysis), internal consistency reliability (Cronbach's alpha), floor and ceiling effects, convergent validity (Pearson correlations), and known-groups validity (multivariate analysis). RESULTS: Results of a confirmatory factor analysis replicated the six-factor latent model that reflects the six separate scales within the WHODAS 2.0 (understanding and communicating; getting around; self-care; getting along with others; life activities; participation). Cronbach's alpha for the scale was 0.94, suggesting good internal consistency reliability. The WHODAS demonstrated a ceiling effect for 19.5 % of participants; there were no floor effects. There was evidence for convergent validity; the WHODAS demonstrated moderate significant correlations with other general measures of health-related quality of life (HRQOL; i.e., RAND-12, EQ5D). Multivariate analyses indicated that late-stage HD participants indicated poorer HRQOL than both early-stage HD and prodromal HD participants for all HRQOL measures. CONCLUSIONS: Findings provide support for both the reliability and validity of the WHODAS 2.0 in individuals with HD.

Socioeconomically Disadvantaged Parents and Oral Health-related Information.

PURPOSE: To assess 1) how socioeconomically disadvantaged parents receive information about their child's oral health, 2) how they prefer to access information and 3) whether their gender, age, ethnicity/race, education, income and the number of children in their family affect oral health-related information use. MATERIALS AND METHODS: Survey data were collected from 506 parents/guardians at a pediatric community dental clinic. The majority of the respondents were female (87%) and African American (54%). They ranged in age from 16 to 73 years. RESULTS: The most frequently used sources for oral health-related information were family members (75%), the child's doctor (74%), other parents (57%) and the child's nurse (54%). The majority of the parents (84%) indicated that the paediatric community dental clinic should have a website with oral health-related information. A total of 79% would use such a website in their own home (73%), at a library (29%), at school (16%) or at work (16%). In addition, 86% also wanted to receive printed information from the community dental clinic. The data showed that European-American parents were more likely than African-American parents to have received information from the child's caregivers, parent support groups, the child's doctor, e-mail groups or books. The respondents' age, income and educational background affected which sources of information they used. CONCLUSIONS: The majority of socioeconomically disadvantaged parents/guardians would like to have access to web-based information about children's oral health and reported that they would use such information.

Understanding the Outcomes Measures used in Huntington Disease Pharmacological Trials: A Systematic Review.

BACKGROUND: The identification of the gene mutation causing Huntington disease has raised hopes for new treatments to ease symptoms and slow functional decline. As such, there has been a push towards designing efficient pharmacological trials (i.e., drug trials), especially with regard to selecting outcomes measures that are both brief and sensitive to changes across the course of the disease, from subtle prodromal changes, to more severe end-stage changes. OBJECTIVES: Recently, to aid in efficient development of new HD research studies, the National Institute of Neurological Disorders and Stroke (NINDS) published recommendations for measurement selection in HD. While these recommendations are helpful, many of the recommended measures have little published data in HD. As such, we conducted a systematic review of the literature to identify the most common outcomes measures used in HD clinical trials. METHODS: Major medical databases, including PubMed, Embase, CINAHL, and the Cochrane Central Register of Controlled Trials, were used to identify peer-reviewed journal articles in English from 2001 through April 2013; 151 pharmacological trials were identified. RESULTS: The majority of HD clinical trials employed clinician-reported outcomes measures (93%); patient reported outcome measures (11%) and observer reported outcome measures (3%) were used with much less frequency. CONCLUSIONS: We provide a review of the most commonly used measures across these trials, compare these measures to the clinical recommendations made by the NINDS working groups, and provide recommendations for selecting measures for future clinical trials that meet the Food and Drug Administration standards.