Advertisement

Quality of Life Research

, Volume 22, Issue 9, pp 2569–2580 | Cite as

Development and validation of the positive affect and well-being scale for the neurology quality of life (Neuro-QOL) measurement system

  • John M. Salsman
  • David Victorson
  • Seung W. Choi
  • Amy H. Peterman
  • Allen W. Heinemann
  • Cindy Nowinski
  • David Cella
Article

Abstract

Purpose

To develop and validate an item-response theory-based patient-reported outcomes assessment tool of positive affect and well-being (PAW). This is part of a larger NINDS-funded study to develop a health-related quality of life measurement system across major neurological disorders, called Neuro-QOL.

Methods

Informed by a literature review and qualitative input from clinicians and patients, item pools were created to assess PAW concepts. Items were administered to a general population sample (N = 513) and a group of individuals with a variety of neurologic conditions (N = 581) for calibration and validation purposes, respectively.

Results

A 23-item calibrated bank and a 9-item short form of PAW was developed, reflecting components of positive affect, life satisfaction, or an overall sense of purpose and meaning. The Neuro-QOL PAW measure demonstrated sufficient unidimensionality and displayed good internal consistency, test–retest reliability, model fit, convergent and discriminant validity, and responsiveness.

Conclusion

The Neuro-QOL PAW measure was designed to aid clinicians and researchers to better evaluate and understand the potential role of positive health processes for individuals with chronic neurological conditions. Further psychometric testing within and between neurological conditions, as well as testing in non-neurologic chronic diseases, will help evaluate the generalizability of this new tool.

Keywords

Positive affect Psychological well-being Quality of life Measurement Patient-reported outcomes Neurological conditions 

Notes

Acknowledgments

Quality of Life in Neurological Disorders (Neuro-QOL) is a multi-site National Institute of Neurological Diseases and Stroke (NINDS) initiative to develop a clinically relevant and psychometrically robust health-related quality of life (HRQoL) assessment tool for adults and children that is responsive to the needs of researchers in a variety of neurological disorders and settings and facilitate comparisons of data across clinical trials in different diseases. Neuro-QOL contract was awarded by NINDS to NorthShore University HealthSystem Research Institute (PIs: David Cella, PhD and Cindy Nowinski, MD, PhD, HHSN265200423601C) and further subcontracted to the following research sites: Department of Medical Social Sciences at Northwestern University Feinberg School of Medicine (PI: David Cella, PhD), Rehabilitation Institute of Chicago (PI: Allen Heinemann, PhD), Cleveland Clinic Foundation (PIs: Deborah Miller, PhD and François Bethoux, MD), University of North Carolina at Charlotte (PI: Amy Peterman, PhD), Boston University (PI: Alan Jetty, PhD), University of Texas Health Science Center at San Antonio (PI: Jose Cavazos, MD, PhD), Dartmouth-Hitchcock Medical Center (PI: Gregory Holmes, MD), University of Pennsylvania Medical System (PI: Andrew Siderowf, MD), Northwestern University Parkinson’s Disease and Movement Disorder Center (PI: Tanya Simuni, MD), University of Chicago (PI: Anthony Reder, MD), Northwestern University Medical Faculty Foundation (PI: Robert Sufit, MD), University of California at Davis (PI: Craig McDonald, MD), Children Memorial Hospital (PI: Douglas Nordli, MD), University of Puerto Rico (PI: Valerie Wojna, MD), and Westat, Inc (PI: Lori Perez, PhD). NIH Project Officer on this project is Claudia Scala Moy, PhD. This manuscript was reviewed by the Neuro-QOL Publications Subcommittee prior to external peer review. See the web site at www.neuroqol.org for additional information on the project.

References

  1. 1.
    National Research Council Committee on Future Directions for Behavioral Social Sciences Research at the National Institutes of Health, Singer, B., & Ryff, C. D. (2001). New horizons in health: An integrative approach. Washington, D.C.: National Academy Press.Google Scholar
  2. 2.
    Aspinwall, L. G., & Tedeschi, R. G. (2010). The value of positive psychology for health psychology: progress and pitfalls in examining the relation of positive phenomena to health. Annals of Behavioral Medicine, 39(1), 4–15.PubMedCrossRefGoogle Scholar
  3. 3.
    Seligman, M. E. P., & Csikszentmihalyi, M. (2000). Positive psychology: An introduction. The American psychologist, 55(1), 5.PubMedCrossRefGoogle Scholar
  4. 4.
    Office for National Statistics. (2007). Working paper: Measuring societal wellbeing in the UK. Retrieved December 15, 2011, from http://www.statistics.gov.uk/downloads/theme_social/Measuring-Societal-Wellbeing.pdf.
  5. 5.
    Gallup Inc. (2011). Gallup world poll: Wellbeing. Retrieved May 20, 2011, from http://www.gallup.com/poll/wellbeing.aspx.
  6. 6.
    Centers for Disease Control and Prevention. (2011). Health-related quality of life (HRQOL): Well being concepts. Retrieved May 25, 2011, from http://www.cdc.gov/hrqol/wellbeing.htm.
  7. 7.
    OECD. (2011). Better life initiative: Measuring well-being and progress. Retrieved May 25, 2011, from http://www.oecd.org/document/0/0,3746,en_2649_201185_47837376_1_1_1_1,00.html.
  8. 8.
    Commission on the Measurement of Economic Performance and Social Progress, Stiglitz, J. E., Sen, A., & Fitoussi, J.-P. (2009). Report by the commission on the measurement of economic performance and social progress. Retrieved May 25, 2011, from http://www.stat.si/doc/drzstat/Stiglitz%20report.pdf.
  9. 9.
    Danner, D. D., Snowdon, D. A., & Friesen, W. V. (2001). Positive emotions in early life and longevity: Findings from the nun study. Journal of Personality and Social Psychology, 80(5), 804–813.PubMedCrossRefGoogle Scholar
  10. 10.
    Pressman, S. D., & Cohen, S. (2005). Does positive affect influence health? Psychological Bulletin, 131(6), 925–971.PubMedCrossRefGoogle Scholar
  11. 11.
    Fredrickson, B. L., & Levenson, R. W. (1998). Positive emotions speed recovery from the cardiovascular sequelae of negative emotions. Cognition and Emotion, 12(2), 191–220.PubMedCrossRefGoogle Scholar
  12. 12.
    Richman, L. S., Kubzansky, L., Maselko, J., Kawachi, I., Choo, P., & Bauer, M. (2005). Positive emotion and health: Going beyond the negative. Health Psychology, 24(4), 422–429.PubMedCrossRefGoogle Scholar
  13. 13.
    Diener, E. (2000). Subjective well-being. The science of happiness and a proposal for a national index. American Psychologist, 55(1), 34–43.PubMedCrossRefGoogle Scholar
  14. 14.
    Judge, T. A., & Bono, J. E. (2001). Relationship of core self-evaluations traits-self-esteem, generalized self-efficacy, locus of control, and emotional stability-with job satisfaction and job performance: A meta-analysis. Journal of Applied Psychology, 86(1), 80–92.PubMedCrossRefGoogle Scholar
  15. 15.
    Judge, T. A., Thoresen, C. J., Bono, J. E., & Patton, G. K. (2001). The job satisfaction-job performance relationship: A qualitative and quantitative review. Psychological Bulletin, 127(3), 376–407.PubMedCrossRefGoogle Scholar
  16. 16.
    Koizumi, M., Ito, H., Kaneko, Y., & Motohashi, Y. (2008). Effect of having a sense of purpose in life on the risk of death from cardiovascular diseases. Journal of Epidemiology, 18(5), 191–196.PubMedCrossRefGoogle Scholar
  17. 17.
    Verduin, P. J., de Bock, G. H., Vliet Vlieland, T. P., Peeters, A. J., Verhoef, J., & Otten, W. (2008). Purpose in life in patients with rheumatoid arthritis. Clinical Rheumatology, 27(7), 899–908.PubMedCrossRefGoogle Scholar
  18. 18.
    Mascaro, N., & Rosen, D. H. (2005). Existential meaning’s role in the enhancement of hope and prevention of depressive symptoms. Journal of Personality, 73(4), 985–1013.PubMedCrossRefGoogle Scholar
  19. 19.
    Aspinwall, L. G., & Tedeschi, R. G. (2010). Of babies and bathwater: A reply to Coyne and Tennen’s views on positive psychology and health. Annals of Behavioral Medicine, 39(1), 27–34.PubMedCrossRefGoogle Scholar
  20. 20.
    Barak, Y., & Achiron, A. (2009). Happiness and neurological diseases. Expert Review of Neurotherapeutics, 9(4), 445–459.PubMedCrossRefGoogle Scholar
  21. 21.
    Gorin, S. S. (2010). Theory, measurement, and controversy in positive psychology, health psychology, and cancer: Basics and next steps. Annals of Behavioral Medicine, 39(1), 43–47.PubMedCrossRefGoogle Scholar
  22. 22.
    Cella, D., Victorson, D., Nowinski, C., Peterman, A., & Miller, D. M. (2006). The Neuro-QOL project: Using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions. Quality of Life Research, A-14, 1353.Google Scholar
  23. 23.
    Cella, D., Nowinski, C., Peterman, A., Victorson, D., Miller, D., Lai, J.-S., et al. (2011). The neurology quality-of-life measurement initiative. Archives of Physical Medicine and Rehabilitation, 92(10 Suppl), S28–S36.PubMedCrossRefGoogle Scholar
  24. 24.
    Rao, D., Choi, S. W., Victorson, D., Bode, R., Peterman, A., Heinemann, A., et al. (2009). Measuring stigma across neurological conditions: The development of the stigma scale for chronic illness (SSCI). Quality of Life Research, 18(5), 585–595.PubMedCrossRefGoogle Scholar
  25. 25.
    Lai, J. S., Nowinski, C., Victorson, D., Bode, R., Podrabsky, T., McKinney, N., et al. (2012). Quality of life outcomes in children with neurological conditions-pediatric Neuro-QOL. Neurorehabilitation and Neural Repair, 26(1), 36–47.PubMedCrossRefGoogle Scholar
  26. 26.
    Gershon, R. C., Lai, J.-S., Bode, R., Choi, S., Moy, C., Bleck, T., et al. (2012). Neuro-QOL: Quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing. Quality of Life Research, 21, 475–486.PubMedCrossRefGoogle Scholar
  27. 27.
    Miller, D., Nowinski, C., Victorson, D., Peterman, A., & Perez, L. (2005). The Neuro-QOL Project: Establishing research priorities through qualitative research and consensus development. Quality of Life Research, 14(9), 2031.Google Scholar
  28. 28.
    Perez, L., Huang, J., Jansky, L., Nowinski, C., Victorson, D., Peterman, A., et al. (2007). Using focus groups to inform the Neuro-QOL measurement tool: Exploring patient-centered, health-related quality of life concepts across neurological conditions. Journal of Neuroscience Nursing, 39(6), 342–353.PubMedCrossRefGoogle Scholar
  29. 29.
    Zemke, R., & Kramlinger, T. (1985). Figuring it out. Reading, MA: Addison Wesley.Google Scholar
  30. 30.
    Basch, C. E. (1987). Focus group interview: An underutilized research technique. Health Education Quarterly, 14, 411–448.PubMedCrossRefGoogle Scholar
  31. 31.
    Basch, C. E., DeCicco, I. M., & Malfetti, J. L. (1989). A focus group study on decision processes of young drivers: Reasons that may support a decision to drink and drive. Health, 16(3), 389–396.Google Scholar
  32. 32.
    Mahoney, F. I., & Barthel, D. W. (1965). Functional evaluation: The Barthel Index. Maryland State Medical Journal, 14, 522–528.Google Scholar
  33. 33.
    Lawton, M. P., & Brody, E. M. (1969). Assessment of older people: Self-maintaining and instrumental activities of daily living. The Gerontologist, 9(3), 179–186.PubMedCrossRefGoogle Scholar
  34. 34.
    Schag, C. C., Heinrich, R. L., & Ganz, P. A. (1984). Karnofsky performance status revisited: Reliability, validity, and guidelines. Journal of Clinical Oncology, 2(3), 187–193.PubMedGoogle Scholar
  35. 35.
    Lewandowski, L. J. (1984). The symbol digit modalities test: A screening instrument for brain-damaged children. Perceptual and Motor Skills, 59(2), 615–618.PubMedCrossRefGoogle Scholar
  36. 36.
    Wechsler, D. (1981). Wechsler adult intelligence scale-revised (WAIS-R) manual. New York, NY: The Psychological Corporation.Google Scholar
  37. 37.
    Johnson, J. A., Coons, S. J., Ergo, A., & Szava-Kovats, G. (1998). Valuation of EuroQOL (EQ-5D) health states in an adult US sample. Pharmacoeconomics, 13(4), 421–433.PubMedCrossRefGoogle Scholar
  38. 38.
    Rabin, R., & de Charro, F. (2001). EQ-5D: A measure of health status from the EuroQol Group. Annals of Medicine, 33(5), 337–343.PubMedCrossRefGoogle Scholar
  39. 39.
    Hays, R. D., Bjorner, J., Revicki, D. A., Spritzer, K., & Cella, D. (2009). Development of physical and mental health summary scores from the patient reported outcomes measurement information system (PROMIS) global items. Quality of Life Research, 18(7), 873–880.PubMedCrossRefGoogle Scholar
  40. 40.
    Cella, D. (1997). Manual of the functional assessment of chronic illness therapy (FACIT Scales). Version 4 Elmhurst, IL: FACIT.org.Google Scholar
  41. 41.
    Guyatt, G. H., Norman, G. R., Juniper, E. F., & Griffith, L. E. (2002). A critical look at transition ratings. Journal of Clinical Epidemiology, 55(9), 900–908.PubMedCrossRefGoogle Scholar
  42. 42.
    Guyatt, G. H., Osoba, D., Wu, A. W., Wyrwich, K. W., & Norman, G. R. (2002). Methods to explain the clinical significance of health status measures. Mayo Clinic Proceedings, 77(4), 371–383.PubMedCrossRefGoogle Scholar
  43. 43.
    Jaeschke, R., Singer, J., & Guyatt, G. H. (1989). Measurement of health status. Ascertaining the minimal clinically important difference. Controlled Clinical Trials, 10(4), 407–415.PubMedCrossRefGoogle Scholar
  44. 44.
    Guyatt, G. H., Berman, L. B., Townsend, M., Pugsley, S. O., & Chambers, L. W. (1987). A measure of quality of life for clinical trials in chronic lung disease. Thorax, 42(10), 773–778.PubMedCrossRefGoogle Scholar
  45. 45.
    Osoba, D., Brada, M., Yung, W. K. A., & Prados, M. (2002). Health-related quality of life in patients treated with temozolomide versus procarbazine for recurrent glioblastoma multiforme. Journal of Clinical Oncology, 18, 1481–1491.Google Scholar
  46. 46.
    Choi, S. W., Gibbons, L. E., & Crane, P. K. (2011). lordif: An R package for detecting differential item functioning using iterative hybrid ordinal logistic regression/item response theory and Monte Carlo simulations. Journal of Statistical Software, 39(8), 1–30.PubMedGoogle Scholar
  47. 47.
    Horn, J. L. (1965). A rationale and test for the number of factors in factor analysis. Psychometrika, 30, 179–185.PubMedCrossRefGoogle Scholar
  48. 48.
    Samman, E. (2007). Psychological and subjective wellbeing: A proposal for internationally comparable indicators. Oxford Development Studies, 35(4), 459–486.CrossRefGoogle Scholar
  49. 49.
    Diener, E., Suh, E. M., Lucas, R. E., & Smith, H. L. (1999). Subjective well-being: Three decades of progress. Psychological Bulletin, 125(2), 276–302.CrossRefGoogle Scholar
  50. 50.
    Robinson, M. D., & Ryff, C. D. (1999). The role of self-deception in perceptions of past, present, and future happiness. Personality and Social Psychology Bulletin, 25(5), 595–606.CrossRefGoogle Scholar
  51. 51.
    Compton, W. C. (2001). Toward a tripartite factor structure of mental health: Subjective well-being, personal growth, and religiosity. The Journal of psychology, 135(5), 486–500.PubMedCrossRefGoogle Scholar
  52. 52.
    Lee Duckworth, A., Steen, T. A., & Seligman, M. E. (2005). Positive psychology in clinical practice. Annual review of clinical psychology, 1, 629–651.PubMedCrossRefGoogle Scholar
  53. 53.
    Ryff, C. D. (1989). Happiness is everything, or is it? Exploration on the meaning of psychological well-being. Journal of Personality and Social Psychology, 57(6), 1069–1081.CrossRefGoogle Scholar
  54. 54.
    Revicki, D., Hays, R., Cella, D., & Sloan, J. (2008). Recommended methods for determining responsiveness and minimally important differences for patient-reported outcomes. Journal of Clinical Epidemiology, 61(2), 102–109.PubMedCrossRefGoogle Scholar
  55. 55.
    Kobau, R., Zack, M. M., Sniezek, J., Lucas, R. E., & Burns, A. (2010). Well-being assessment: An evaluation of well-being scales for public health and population estimates of well-being among US adults. Applied Psychology: Health and Well-Being, 2(3), 272–297.CrossRefGoogle Scholar
  56. 56.
    Embretson, S. E., & Reise, S. P. (2000). Item response theory for psychologists. Mahwah, N.J.: Lawrence Erlbaum Associates.Google Scholar
  57. 57.
    Embretson, S. E. (2006). The continued search for nonarbitrary metrics in psychology. American Psychologist American Psychologist, 61(1), 50–55.CrossRefGoogle Scholar
  58. 58.
    Weiss, D. J. (2004). Computerized adaptive testing for effective and efficient measurement in counseling and education. Measurement and Evaluation in Counseling and Development, 37(2), 70–84.Google Scholar

Copyright information

© Springer Science+Business Media Dordrecht 2013

Authors and Affiliations

  • John M. Salsman
    • 1
    • 2
  • David Victorson
    • 1
    • 2
    • 3
  • Seung W. Choi
    • 1
    • 4
  • Amy H. Peterman
    • 5
  • Allen W. Heinemann
    • 6
    • 7
  • Cindy Nowinski
    • 1
    • 2
  • David Cella
    • 1
    • 2
    • 3
  1. 1.Department of Medical Social SciencesNorthwestern University Feinberg School of MedicineChicagoUSA
  2. 2.Center for Patient-Centered Outcomes, Northwestern University Feinberg School of MedicineChicagoUSA
  3. 3.Center for Healthcare StudiesNorthwestern University Feinberg School of MedicineChicagoUSA
  4. 4.CTB/McGraw-HillMontereyUSA
  5. 5.Department of PsychologyUniversity of North Carolina at CharlotteCharlotteUSA
  6. 6.Department of Physical Medicine and RehabilitationNorthwestern University Feinberg School of MedicineChicagoUSA
  7. 7.Center for Rehabilitation Outcomes ResearchRehabilitation Institute of ChicagoChicagoUSA

Personalised recommendations