Using veterans' perspectives to enhance rehabilitation outcome measures: value of qualitative methods.

Elizabeth M. Hannold, PhD; Coauthors not pictured: Jini M. Hanjian, PhD; Meggan M. Jordan, MA; Mary Joan Roach, PhD; and Craig A. Velozo, PhD Innovative rehabilitation interventions and technologies aimed at recovery of walking show great promise and are receiving considerable support from the Department of Veterans Affairs (VA) Rehabilitation Research and Development (RR&D) Service. For example, functional electrical stimulation (FES) improves gait component execution and knee flexion coordination for patients with chronic stroke [1]. Locomotor training (LT) using partial body-weight support with a treadmill and manual assistance improves gait speed in persons with chronic stroke and mild to moderate stroke severity [2]. LT with a driven-gait orthosis improves gait velocity, endurance, and functional performance in ambulatory persons with chronic, incomplete spinal cord injury (SCI) [3]. In general, clinical measures are the standard for documentation of the outcomes of these innovative treatments. Typical clinical measures include walking speed [4], the Walking Index for SCI II [5], the Berg Balance Scale [6], and the Dynamic Gait Index [7]. A weakness of these existing clinical outcome measures is that the majority were generated with little input from veterans. Although valuable to scientists and clinicians, presently used laboratory and clinically generated rehabilitation measures may fail to capture outcomes that individuals recovering from disability view as most meaningful [4]. For example, a recent case study of a veteran with an incomplete SCI who was participating in manually assisted LT reported activities of daily living and role/social participation as important areas of change [8]. The participant often identified a renewed ability to engage in personally meaningful tasks, aside from gait changes, as a highly valued treatment outcome. This editorial (1) examines the challenge of developing veterancentered outcome measures that are useful for the rehabilitation process and meaningful for the veteran and (2) discusses the role of qualitative methodologies in the development of outcome measures based on the veterans’ perspective. Disability scholars have frequently criticized scientists without disabilities who are conducting disability-related research [9–10]. These scholars charge that, in the absence of personal disability experience, scientists without disabilities may be insensitive to the full spectrum of disability experiences. Like much of the general population, scientists may incorrectly assume that disability and its consequences are always unfavorable experiences and fail to recognize any positive aspects of the disability experience—a tendency called “catastrophizing” [11]. Disability scholars claim that this bias may lead scientists to inaccurately assume and judge the abilities, needs, and priorities of people with disabilities [11–12]. When discussing challenges associated with the knowledge translation of rehabilitation research findings, Sherwood raises the question [13], Who are the ultimate beneficiaries of rehabilitation and disability research? Sherwood