A new scale to measure family members' perception of community health care services for persons with Huntington disease

Abstract

RATIONALE, AIMS, AND OBJECTIVES: Huntington disease (HD) is a progressive genetic brain disease leading to disruptive cognitive, behavioural and physical impairments. Persons with the condition and their caregivers need appropriate and accessible health care services to help them manage the disease adequately. The purpose of this study was to evaluate the psychometric properties of a new scale that measures family members' perception of community health care services (CHCS) for persons with HD. A methodological design was used to examine the initial reliability and dimensionality of the CHCS scale among 245 family members of persons with a diagnosis of HD. Data analysis consisted of computing Cronbach's alpha coefficients, calculating the 95% confidence interval for alpha and performing item-analysis and exploratory factor analysis. Reliability of the scale based on Cronbach's alpha was 0.83. Factor analysis using principal component analysis and varimax rotation suggested that three interpretable factors underlie the scale. Factor 1, HD knowledge, had alpha = 0.82, eigenvalue of 4.67 and explained 33.42% of the variance; factor 2, HD community resources, had alpha = 0.62, eigenvalue of 1.68 and explained 12.02% of the variance; factor 3, individualized HD management, had alpha = 0.77, eigenvalue of 1.45 and explained 10.39% of the variance. Findings from this study provide evidence of both construct validity and internal consistency reliability of the CHCS scale. Further psychometric testing of the scale in other samples of family caregivers of persons with HD is warranted.