Neuro-QOL

Abstract

Objective: To address the need for brief, reliable, valid, and standardized quality of life (QOL) assessment applicable across neurologic conditions. Methods: Drawing from larger calibrated item banks, we developed short measures (8-9 items each) of 13 different QOL domains across physical, mental, and social health and evaluated their validity and reliability. Three samples were utilized during short form development: general population (Internet-based, n 2,113); clinical panel (Internet-based, n 553); and clinical outpatient (clinic-based, n 581). All short forms are expressed as T scores with a mean of 50 and SD of 10. Results: Internal consistency (Cronbach) of the 13 short forms ranged from 0.85 to 0.97. Correlations between short form and full-length item bank scores ranged from 0.88 to 0.99 (0.82-0.96 after removing common items from banks). Online respondents were asked whether they had any of 19 different chronic health conditions, and whether or not those reported conditions interfered with ability to function normally. All short forms, across physical, mental, and social health, were able to separate people who reported no health condition from those who reported 1-2 or 3 or more. In addition, scores on all 13 domains were worse for people who acknowledged being limited by the health conditions they reported, compared to those who reported conditions but were not limited by them. Conclusion: These 13 brief measures of self-reported QOL are reliable and show preliminary evidence of concurrent validity inasmuch as they differentiate people based upon number of reported health conditions and whether those reported conditions impede normal function. Neurology ® 2012;78:1860-1867 GLOSSARY ALS amyotrophic lateral sclerosis; CAT computerized adaptive test; IRT item response theory; MS multiple sclerosis; NINDS National Institute of Neurologic Disorders and Stroke; PD Parkinson disease; QOL quality of life. In neurology clinical research, traditional outcome measures of disease status often fail to represent the full impact of disease and treatment. The patient's experience of disease symptoms , treatment side effects, functioning, and well-being-commonly referred to as health-related quality of life (QOL)-is often not included in a systematic evaluation of clinical benefit. Yet, the patient's experience of disease and treatment can be the key driver of treatment impact, acceptability, or value. 1 While many QOL scales are available to the neurology clinical researcher, some have questionable validity or may be difficult to interpret. In addition, different instruments tend to be used in different neurologic conditions, rendering cross-disease evaluations of QOL burden or benefit impossible. 2-6 Even within a given condition, there is seldom consensus on common measures, which impedes cross-study comparisons of relative disease burden, benefits of different treatments, or other factors.