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

PURPOSE: A comprehensive assessment of upper-extremity function must include quality of function, speed of task performance, and self-reported use. No measure currently exists that combines self-report and performance-based items for the upper extremity. Moreover, existing hand function measures lack systematic development and stakeholder perspectives. To overcome these limitations, a new measure of upper-extremity function, the Hand and Arm Function Measure (HAFM), was developed with a combination of performance-based and self-reported items. The purpose of this research study was to use a systematic framework to develop the HAFM and engage stakeholders early on in preliminary development of the items.

DESIGN: A qualitative phenomenological study was designed and semistructured interviews were conducted with stakeholders. Stakeholders involved were experts in clinical practice and measurement and people with neurological conditions.

METHOD: Four experts that included two occupational therapists, a physical therapist, and a psychometrician participated in a focus group discussing the construct, developed an early item bank, and later participated in item writing and modification. Community-dwelling people with stroke (n = 7), traumatic brain injury (n = 2), multiple sclerosis (n = 5), and Parkinson’s 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 HAFM administration. The qualitative data were transcribed and coded by two independent researchers (using Dedoose Version 6.2; Hermosa Beach, CA). The themes were developed based on conventional content analysis. Construct definition was developed based on the framework of the International Classification of Functioning, Disability and Health (World Health Organization, 2001) 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.

RESULTS: Focus groups generated eight key themes of conditions, compensation, adaptation, dominance, items, hand function, medications, and testing. A 145-item bank was developed. A systematic selection process in which the items were ranked by high frequency and co-occurrence among all groups of informants was developed. The top one-third of these items were selected for inclusion in the final set. A preliminary set of 59 HAFM self-report and performance-based items was developed for administration that included cognitive interviews about items. Cognitive interview themes included new items and suggested modifications to existing items. HAFM items needing modification or suggested for addition or deletion were nominated, and 39 items were modified.

CONCLUSION: The data gathered from theoretical and measurement frameworks and the perspectives of the stakeholders contributed to the face and content-related evidence for validity of the HAFM measures. With the long-term goal of developing a psychometrically robust assessment, plans for future HAFM refinement include piloting the preliminary item set with people with neurological conditions and ultimately proceeding to item tryouts and large-scale administration. This research impacts the development and transitions of people with neurological conditions who have upper-extremity impairments by providing a robust measurement tool for therapists to track changes over time.

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