Literature DB >> 22573626

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

D Cella1, 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 Wortman, S Choi, R Gershon, N Rothrock, C Moy.   

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.

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Mesh:

Year:  2012        PMID: 22573626      PMCID: PMC3369516          DOI: 10.1212/WNL.0b013e318258f744

Source DB:  PubMed          Journal:  Neurology        ISSN: 0028-3878            Impact factor:   9.910


  17 in total

1.  The neurology quality-of-life measurement initiative.

Authors:  David Cella; Cindy Nowinski; Amy Peterman; David Victorson; Deborah Miller; Jin-Shei Lai; Claudia Moy
Journal:  Arch Phys Med Rehabil       Date:  2011-10       Impact factor: 3.966

Review 2.  The suitability of patient-based measures in the field of Parkinson's disease: a systematic review.

Authors:  Brenda L Den Oudsten; Guus L Van Heck; Jolanda De Vries
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Review 3.  Item response theory and clinical measurement.

Authors:  Steven P Reise; Niels G Waller
Journal:  Annu Rev Clin Psychol       Date:  2009       Impact factor: 18.561

4.  Neuro-QOL and the NIH Toolbox: implications for epilepsy.

Authors:  Cindy J Nowinski; David Victorson; Jose E Cavazos; Richard Gershon; David Cella
Journal:  Therapy       Date:  2010-09-01

5.  Neuro-QOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing.

Authors:  Richard C Gershon; Jin Shei Lai; Rita Bode; Seung Choi; Claudia Moy; Tom Bleck; Deborah Miller; Amy Peterman; David Cella
Journal:  Qual Life Res       Date:  2011-08-27       Impact factor: 4.147

Review 6.  Patient-reported Outcome Measures in Multiple Sclerosis.

Authors:  A Riazi
Journal:  Int MS J       Date:  2006-11

Review 7.  Assessment of patient-reported outcomes in clinical trials: the example of health-related quality of life.

Authors:  Ingela Wiklund
Journal:  Fundam Clin Pharmacol       Date:  2004-06       Impact factor: 2.748

8.  Measuring stigma across neurological conditions: the development of the stigma scale for chronic illness (SSCI).

Authors:  Deepa Rao; Seung W Choi; David Victorson; Rita Bode; Amy Peterman; Allen Heinemann; David Cella
Journal:  Qual Life Res       Date:  2009-04-25       Impact factor: 4.147

9.  A qualitative study of quality of life after stroke: the importance of social relationships.

Authors:  Elizabeth B Lynch; Zeeshan Butt; Allen Heinemann; David Victorson; Cindy J Nowinski; Lori Perez; David Cella
Journal:  J Rehabil Med       Date:  2008-07       Impact factor: 2.912

10.  Using focus groups to inform the Neuro-QOL measurement tool: exploring patient-centered, health-related quality of life concepts across neurological conditions.

Authors:  Lori Perez; Jennifer Huang; Liz Jansky; Cindy Nowinski; David Victorson; Amy Peterman; David Cella
Journal:  J Neurosci Nurs       Date:  2007-12       Impact factor: 1.230

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  178 in total

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Authors:  Carla M Bann; Richard T Abresch; Barbara Biesecker; Kristin Caspers Conway; Chad Heatwole; Holly Peay; Peter Scal; Jonathan Strober; Karen Uzark; Jodi Wolff; Marjorie Margolis; Angela Blackwell; Natalie Street; Angela Montesanti; Julie Bolen
Journal:  Neurology       Date:  2015-02-06       Impact factor: 9.910

2.  Validation of Neuro-QoL and PROMIS Mental Health Patient Reported Outcome Measures in Persons with Huntington Disease.

Authors:  Noelle E Carlozzi; Siera Goodnight; Anna L Kratz; Julie C Stout; Michael K McCormack; Jane S Paulsen; Nicholas R Boileau; David Cella; Rebecca E Ready
Journal:  J Huntingtons Dis       Date:  2019

3.  Linking of the quality of life in neurological disorders (Neuro-QoL) to the international classification of functioning, disability and health.

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Journal:  Qual Life Res       Date:  2017-05-05       Impact factor: 4.147

4.  The Better Assessment of Illness Study for Delirium Severity: Study Design, Procedures, and Cohort Description.

Authors:  Tammy T Hshieh; Tamara G Fong; Eva M Schmitt; Edward R Marcantonio; Madeline L D'Aquila; Jacqueline Gallagher; Guoquan Xu; Yun R Guo; Tatiana F Abrantes; Sylvie E Bertrand; Richard N Jones; Sharon K Inouye
Journal:  Gerontology       Date:  2018-07-20       Impact factor: 5.140

5.  Ecological Momentary Assessment of Pain, Fatigue, Depressive, and Cognitive Symptoms Reveals Significant Daily Variability in Multiple Sclerosis.

Authors:  Anna L Kratz; Susan L Murphy; Tiffany J Braley
Journal:  Arch Phys Med Rehabil       Date:  2017-07-18       Impact factor: 3.966

6.  Agitation, Delirium, and Cognitive Outcomes in Intracerebral Hemorrhage.

Authors:  Lisa J Rosenthal; Brandon A Francis; Jennifer L Beaumont; David Cella; Michael D Berman; Matthew B Maas; Eric M Liotta; Robert Askew; Andrew M Naidech
Journal:  Psychosomatics       Date:  2016-08-05       Impact factor: 2.386

7.  Role of Psychosocial Factors on Communicative Participation among Survivors of Head and Neck Cancer.

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8.  Understanding patient-reported outcome measures in Huntington disease: at what point is cognitive impairment related to poor measurement reliability?

Authors:  N E Carlozzi; S Schilling; A L Kratz; J S Paulsen; S Frank; J C Stout
Journal:  Qual Life Res       Date:  2018-06-16       Impact factor: 4.147

9.  "I would have told you about being forgetful, but I forgot": the experience of cognitive changes and communicative participation after head and neck cancer.

Authors:  Susan Bolt; Carolyn Baylor; Michael Burns; Tanya Eadie
Journal:  Disabil Rehabil       Date:  2018-11-19       Impact factor: 3.033

10.  Real-world implementation and outcomes of health behavior and mental health assessment.

Authors:  Hector P Rodriguez; Beth A Glenn; Tanya T Olmos; Alex H Krist; Stephanie L Shimada; Rodger Kessler; Suzanne Heurtin-Roberts; Roshan Bastani
Journal:  J Am Board Fam Med       Date:  2014 May-Jun       Impact factor: 2.657

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