Institutional members access full text with Ovid®

Share this article on:

Using Focus Groups To Inform the Neuro‐QOL Measurement Tool: Exploring Patient‐Centered, Health‐Related Quality of Life Concepts Across Neurological Conditions

Perez, Lori; Huang, Jennifer; Jansky, Liz; Nowinski, Cindy; Victorson, David; Peterman, Amy; Cella, David

Journal of Neuroscience Nursing: December 2007 - Volume 39 - Issue 6 - p 342–353
Article

Measurement of health‐related quality of life (HRQL) is of particular importance in neurology clinical trials, where differences in clinical measurements or laboratory data may not translate into significant benefit to the patients. A fundamental consideration in the development and use of an HRQL instrument is whether the instrument's conceptual framework accurately reflects the HRQL experience of the population of interest. This study details the findings from formative research that focused on the identification of content area for an HRQL measurement system in neurology. Specifically, 11 focus groups were conducted with caregivers and patients diagnosed with 7 neurological conditions that represented a range of symptomatology and ages. Through an analytic process using techniques derived from grounded theory, several themes emerged that describe the complexity of HRQL issues and the impact of neurological disorders on multiple areas of life functioning and experience. Findings suggest that although HRQL is comparable across neurological disorders, the contribution of specific domains to overall HRQL may differ among disorders.

Questions or comments about this article may be directed to Jennifer Huang, PhD, at jenniferhuang@westat.com. She is a senior study director at Westat, Rockville, MD. Westat is an employee‐owned research firm that has conducted or supported national and international health research for U.S. federal government agencies, international agencies, academic institutions, and private clients for more than 25 years.

Lori Perez, PhD, is a senior study director at Westat, Rockville, MD.

Liz Jansky, MA, is a senior study director at Westat, Rockville, MD.

Cindy Nowinski, MD PhD, is director of Outcomes Education at the Center on Outcomes, Research, and Education at Evanston Northwestern Healthcare, Evanston, IL. She is also a research assistant professor in the Institute for Healthcare Studies at the Northwestern University Feinberg School of Medicine, Evanston, IL.

David Victorson, PhD, is a research associate for the Center on Outcomes, Research, and Education at Evanston Northwestern Healthcare, Evanston, IL. He is also an assistant professor at the Northwestern University Feinberg School of Medicine, Evanston, IL.

Amy Peterman, PhD, is an associate professor of psychology at the University of North Carolina at Charlotte, Charlotte, NC.

David Cella, PhD, is the executive director for the Center on Outcomes, Research, and Education at Evanston Northwestern Healthcare, Evanston, IL. He is also a professor at the Northwestern University Feinberg School of Medicine, Evanston, IL.

© 2007 American Association of Neuroscience Nurses