Using focus groups to inform the neuro-QOL measurement tool: Exploring patient-centered, health-related quality of life concepts across neurological conditions

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

*Corresponding author for this work

Research output: Contribution to journalArticle

53 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)342-353
Number of pages12
JournalJournal of Neuroscience Nursing
Issue number6
Publication statusPublished - Jan 1 2007


ASJC Scopus subject areas

  • Surgery
  • Endocrine and Autonomic Systems
  • Clinical Neurology
  • Medical–Surgical

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