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, behavioral, 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. Methods 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 alphas, and performing item-analysis and exploratory factor analysis. Results Reliability of the scale based on Cronbach's alpha (α) was .83. Factor analysis using Principal Component Analysis and Varimax Rotation suggested that three interpretable factors underlie the scale. Factor 1: HD Knowledge, had α =.82, eigenvalue of 4.67, and explained 33.42% of the variance; Factor 2: HD Community Resources, had α = .62, eigenvalue of 1.68, and explained 12.02% of the variance; and, Factor 3: Individualized HD Management, had α =.77, eigenvalue of 1.45, and explained 10.39% of the variance. Conclusions 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.

Healthcare experiences of families affected by Huntington disease: need for improved care

“…17,18 Recent psychometric research utilizing factor analysis revealed three main areas of concern for HD carers: individualized care for their relative, availability of community resources and HD knowledge in healthcare professionals. 10,19 As the first point of contact inthe Canadian healthcare system, primary care plays a central role for families affected by genetic illness, including HD. Information about genetic tests is increasingly available to patients via the internet, popular media and direct-toconsumer marketing, and patients are likely to turn to their primary care providers (PCPs) for advice in making informed decisions about genetic services.…”