Preliminary Development of the Hand and Arm Function Measure for People with Neurological Conditions

Abstract

Background: Many people with neurological conditions experience difficulty with their hands and arms. Measures for assessing hand and arm function with sound psychometric properties are needed. Understanding patient/client’s perceptions of their hand use and the quality and speed of task performance, while critical, are not combined in a comprehensive measure. Purpose: To develop Hand and Arm Function Measure (HAFM) with stakeholder engagement, that is performance-based, and includes self-report. Method: A systematic review of literature of hand and arm function measures was conducted and psychometric properties summarized. Four experts, two occupational therapists, a physical therapist and a psychometrician, participated in a focus group discussing the construct, early item bank development, and later participated in item writing and modification. People with stroke (n=7), traumatic brain injury (n=2), multiple sclerosis (n=5) and Parkinson disease (n=6) participated in seven focus groups and eight cognitive interviews, sharing their experiences of hand and arm function difficulties in daily life and during the HAFM administration. Results: Twenty-two measures of hand and arm function were reported in literature in the past decade. Analysis revealed, they lacked psychometric rigor, ignored the sensory capability of the hand, and were inadequately studied in people with neurological conditions. The construct definition was developed based on the frameworks of International Classification of Functioning, Disability and Health and the principles of Evidence Centered Design. The experts helped define the construct, develop the preliminary item bank, and modify items. The focus groups of people with neurological conditions helped identify items and aspects of hand function that were important to them. All items were pooled and a preliminary set of self-report and performance-based items was developed for use in the cognitive interviews. Based on the cognitive interviews, HAFM items needing modification or suggested for addition/deletion to the HAFM were nominated. Conclusions: Data gathered from literature review, theoretical and measurement frameworks, and the stakeholders contributed to the face and content-related evidence for validity of the HAFM scores. Plans for future HAFM development include piloting the preliminary item set with people with neurological conditions and ultimately proceeding to item tryouts and large-scale administration.