Neuro-QOL: Brief measures of health-related quality of life for clinical research in neurology

D. Cella*, J. S. Lai, C. J. Nowinski, D. Victorson, A. Peterman, D. Miller, F. Bethoux, A. Heinemann, S. Rubin, J. E. Cavazos, A. T. Reder, R. Sufit, T. Simuni, G. L. Holmes, A. Siderowf, V. Wojna, R. Bode, N. McKinney, T. Podrabsky, K. WortmanS. Choi, R. Gershon, N. Rothrock, C. Moy

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

506 Scopus citations

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 α) 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.

Original languageEnglish (US)
Pages (from-to)1860-1867
Number of pages8
JournalNeurology
Volume78
Issue number23
DOIs
StatePublished - Jun 5 2012

Funding

Dr. Cella has received research support from the National Institute of Neurological Disorders and Stroke (NINDS) contract number HHSN265200423601C . Dr. Lai reports no disclosures. Dr. Nowinski receives or has received research support from the NIH (contracts #HHSN265200423601C and #HHSN260200600007C ) and Teva Pharmaceuticals. She has also received honoraria for writing an article for Medlink. Dr. Victorson holds stock options in Eli Lily and Company, received an honoraria for serving on the Steering Committee of the Reeve Neuro-Recovery Network, was funded by NIH contracts #HHSN265200423601C and #HHS-N-260–2006-00007-C and grants #R01HD054569–02NIDRR, #1U01NS056975–01, and #R01 CA104883 , received support from the American Cancer Society (national and Illinois Division) for research in prostate cancer, received institutional support from NorthShore University HealthCare System for research in prostate cancer, received institutional support from the Medical University of South Carolina for sarcoidosis research, and received institutional support from the Northwestern Medical Faculty Foundation for urology research. Dr. Peterman receives royalties from an online entry in UpToDate; was supported by NIH Contract # HHSN265200423601C for the study on which this manuscript reports; and received institutional funding for research on spirituality and health. Dr. Miller has received research support from NIH contract HHSN26520043601C and TEVA NeuroSciences. She has received consulting fees from Biogen Idec and the Consortium of Multiple Sclerosis Centers. She serves on the editorial board of Quality of Life Research. Dr. Bethoux receives honoraria for consulting from Medtronic Inc., Biogen Idec, and IMPAX Laboratories. Dr. Heinemann receives salary support from a variety of federal research and training grants: Enhancing Quality of Prosthetic and Orthotic Services with Process and Outcome Information, National Institute on Disability and Rehabilitation Research ( H133E080009 ); Rehabilitation Research and Training Center on Improving Measurement of Medical Rehabilitation Outcomes ( H133B090024 ), National Institute on Disability and Rehabilitation Research; Midwest Regional Spinal Cord Injury Care System ( H133N060014 ), National Institute on Disability and Rehabilitation Research; Midwest Regional Traumatic Brain Injury Care System, National Institute on Disability and Rehabilitation Research (H133A080045); Development of Quality Measures for Post-Stroke Rehabilitation, NIDRR/USDE. Dr. Rubin, Dr. Cavazos, and Dr. Reder report no disclosures. Dr. Sufit has served on Data Safety and Monitoring Boards for the NINDS and Pfizer Pharmaceuticals. He has received honoraria for speaking engagements from Hill-Rom. He has served as an expert in medical malpractice litigation. Dr. Simuni reports no disclosures. Dr. Holmes serves on the Advisory Board for Questcor Pharmaceuticals, Sunovion Pharmaceuticals, and Upsher-Smith Laboratories. Dr. Siderowf is supported by a Morris K. Udall Parkinson's Disease Research Center of Excellence grant from NINDS ( NS-053488 ), and has been supported by SAP4100027296, a health research grant awarded by the Department of Health of the Commonwealth of Pennsylvania from the Tobacco Master Settlement Agreement under Act 2001–77. Dr. Wojna has received personal compensation for activities with GlaxoSmithKline as a speaker and research support from Biogen Idec. and is funded by NIH grants #2U54NS43011, #U54RR022762 (pilot study), and #S11NS46278. Dr. Bode, N. McKinney, T. Podrabsky, K. Wortman, and Dr. Choi report no disclosures. Dr. Gershon has received personal compensation for activities as a speaker and consultant with Sylvan Learning, Rockman, and the American Board of Podiatric Surgery. He has several grants awarded by NIH: N01-AG-6–0007, 1U5AR057943–01, HHSN260200600007, 1U01DK082342–01, AG-260–06-01, HD05469, NINDS: U01 NS 056 975 02, NHLBI K23: K23HL085766, NIA: 1RC2AG036498–01, NIDRR: H133B090024, OppNet: N01-AG-6–0007 (PI: David Cella). Dr. Rothrock receives royalties from the publication of “Evaluation of Health-Related Quality of Life” in UpToDate. She receives research support from the National Institutes of Health and previously the Center for Disease Control and Prevention. Dr. Moy reports no disclosures. Go to Neurology.org for full disclosures.

ASJC Scopus subject areas

  • Clinical Neurology

Fingerprint

Dive into the research topics of 'Neuro-QOL: Brief measures of health-related quality of life for clinical research in neurology'. Together they form a unique fingerprint.

Cite this