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

Quality of Life Research volume 26, pages 2435–2448 (2017)Cite this article

Abstract

Background

The quality of life in neurological disorders (Neuro-QoL) is a U.S. National Institutes of Health initiative that produced a set of self-report measures of physical, mental, and social health experienced by adults or children who have a neurological condition or disorder.

Objective

To describe the content of the Neuro-QoL at the item level using the World Health Organization’s international classification of functioning, disability and health (ICF).

Methods

We assessed the Neuro-QoL for its content coverage of functioning and disability relative to each of the four ICF domains (i.e., body functions, body structures, activities and participation, and environment). We used second-level ICF three-digit codes to classify items into categories within each ICF domain and computed the percentage of categories within each ICF domain that were represented in the Neuro-QoL items.

Results

All items of Neuro-QoL could be mapped to the ICF categories at the second-level classification codes. The activities and participation domain and the mental functions category of the body functions domain were the areas most often represented by Neuro-QoL. Neuro-QoL provides limited coverage of the environmental factors and body structure domains.

Conclusions

Neuro-QoL measures map well to the ICF. The Neuro-QoL–ICF-mapped items provide a blueprint for users to select appropriate measures in ICF-based measurement applications.

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Abbreviations

ASCQ-Me:

Adult sickle cell quality of measurement information system

HRQoL:

Health-related quality of life

Neuro-QoL:

Quality of life in neurological disorders

SCI-QoL:

Spinal cord injury quality of life measurement system

TBI-QoL:

Traumatic brain injury quality of life measurement system

PRO:

Patient-reported outcome

ICF:

International classification of functioning, disability and health

WHO:

World Health Organization

References

  1. Cieza, A., Geyh, S., Chatterji, S., Kostanjsek, N., Üstün, B., & Stucki, G. (2005). ICF linking rules: an update based on lessons learned. Journal of Rehabilitation Medicine, 37(4), 212–218.

    Google Scholar 

  2. Zbrozek, A., Hebert, J., Gogates, G., Thorell, R., Dell, C., Molsen, E., et al. (2013). Validation of electronic systems to collect patient-reported outcome (PRO) data—recommendations for clinical trial teams: Report of the ISPOR ePRO Systems validation good research practices task force. Value in Health, 16(4), 480–489.

    Google Scholar 

  3. Rothman, M. L., Beltran, P., Cappelleri, J. C., Lipscomb, J., & Teschendorf, B. (2007). Patient-reported outcomes: Conceptual issues. Value in Health, 10(s2), S66–S75.

    PubMed  PubMed Central  Google Scholar 

  4. Snyder, C. F., Aaronson, N. K., Choucair, A. K., Elliott, T. E., Greenhalgh, J., Halyard, M. Y., et al. (2012). Implementing patient-reported outcomes assessment in clinical practice: A review of the options and considerations. Quality of Life Research, 21(8), 1305–1314.

    Google Scholar 

  5. Gilbert, A., Sebag-Montefiore, D., Davidson, S., & Velikova, G. (2015). Use of patient-reported outcomes to measure symptoms and health related quality of life in the clinic. Gynecologic Oncology, 136(3), 429–439.

    PubMed  PubMed Central  Google Scholar 

  6. Snyder, C. F., Wu, A. W., Miller, R. S., Jensen, R. E., Bantug, E. T., & Wolff, A. C. (2011). The role of informatics in promoting patient-centered care. Cancer, 17(4), 211–218.

    Google Scholar 

  7. Wu, A. W., White, S. M., Blackford, A. L., Wolff, A. C., Carducci, M. A., Herman, J. M., et al. (2016). Improving an electronic system for measuring PROs in routine oncology practice. Journal of Cancer Survivorship, 10(3), 573–582.

    PubMed  PubMed Central  Google Scholar 

  8. Bodenreider, O., & Stevens, R. (2006). Bio-ontologies: Current trends and future directions. Briefings in Bioinformatics, 7(3), 256–274.

    CAS  PubMed  PubMed Central  Google Scholar 

  9. Tucker, C. A., Cieza, A., Riley, A. W., Stucki, G., Lai, J. S., Ustun, T. B., et al. (2014). Concept analysis of the patient reported outcomes measurement information system (PROMIS((R))) and the international classification of functioning, disability and health (ICF). Quality of Life Research, 23(6), 1677–1686. doi:10.1007/s11136-014-0622-y.

    Article  PubMed  PubMed Central  Google Scholar 

  10. Ustun, B. T., & Jakob, R. (2005). Calling a spade a spade: meaningful definitions of health conditions. Bulletin of the World Health Organization, 83(11), 802.

    PubMed  PubMed Central  Google Scholar 

  11. World Health Organization. (2001). International classification of functioning, disability and health. Geneva: World Health Organization.

    Google Scholar 

  12. Cieza, A., Brockow, T., Ewert, T., Amman, E., Kollerits, B., Chatterji, S., et al. (2002). Linking health-status measurements to the International Classification of Functioning, Disability and Health. Journal of Rehabilitation Medicine, 34(5), 205–210.

    Google Scholar 

  13. Stucki, G., Cieza, A., & Melvin, J. (2007). The International Classification of Functioning, Disability and Health (ICF): a unifying model for the conceptual description of the rehabilitation strategy. Journal of Rehabilitation Medicine, 39(4), 279–285. doi:10.2340/16501977-0041.

    Article  Google Scholar 

  14. Stucki, G. (2005). International Classification of Functioning, Disability, and Health (ICF): a promising framework and classification for rehabilitation medicine. American Journal of Physical Medicine and Rehabilitation, 84(10), 733–740.

    Google Scholar 

  15. Tucker, C. A., Escorpizo, R., Cieza, A., Lai, J. S., Stucki, G., Ustun, T. B., et al. (2014). Mapping the content of the Patient-Reported Outcomes Measurement Information System (PROMIS®) using the International Classification of Functioning, Health and Disability. Quality of Life Research, 23(9), 2431–2438.

    PubMed  PubMed Central  Google Scholar 

  16. Cella, D., Lai, J. S., Nowinski, C. J., Victorson, D., Peterman, A., Miller, D., et al. (2012). Neuro-QOL: brief measures of health-related quality of life for clinical research in neurology. Neurology, 78(23), 1860–1867.

    CAS  PubMed  PubMed Central  Google Scholar 

  17. 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(3), 475–486.

    Google Scholar 

  18. Abresch, R. T., Carter, G. T., Han, J. J., & McDonald, C. M. (2009). New clinical end points in rehabilitation medicine: tools for measuring quality of life. American Journal of Hospice and Palliative Medicine, 26(6), 483–492.

    Google Scholar 

  19. Vincent, J. I., MacDermid, J. C., King, G. J., & Grewal, R. (2015). Linking of the patient rated elbow evaluation (PREE) and the american shoulder and elbow surgeons-elbow questionnaire (pASES-e) to the International Classification of Functioning Disability and Health (ICF) and hand core sets. Journal of Hand Therapy, 28(1), 61–68.

    Google Scholar 

  20. Geyh, S., Cieza, A., Kollerits, B., Grimby, G., & Stucki, G. (2007). Content comparison of health-related quality of life measures used in stroke based on the international classification of functioning, disability and health (ICF): a systematic review. Quality of Life Research, 16(5), 833–851.

    CAS  PubMed  PubMed Central  Google Scholar 

  21. 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), S28–S36.

    PubMed  PubMed Central  Google Scholar 

  22. Salsman, J. M., Victorson, D., Choi, S. W., Peterman, A. H., Heinemann, A. W., Nowinski, C., et al. (2013). Development and validation of the positive affect and well-being scale for the neurology quality of life (Neuro-QOL) measurement system. Quality of Life Research, 22(9), 2569–2580.

    PubMed  PubMed Central  Google Scholar 

  23. Victorson, D., Cavazos, J. E., Holmes, G. L., Reder, A. T., Wojna, V., Nowinski, C., et al. (2014). Validity of the Neurology Quality-of-Life (Neuro-QoL) measurement system in adult epilepsy. Epilepsy & Behavior, 31, 77–84.

    Google Scholar 

  24. 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.

    PubMed  PubMed Central  Google Scholar 

  25. 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.

    PubMed  PubMed Central  Google Scholar 

  26. Embretson, S. E., & Reise, S. P. (2013). Item response theory. Mahwah: Lawrence Erlbaum Associates, Inc.

    Google Scholar 

  27. Hambleton, R. K. (1991). Fundamentals of item response theory (Vol. 2). Amherst: Sage publications.

    Google Scholar 

  28. Grayson, K., & Rust, R. (2001). Interrater reliability. Journal of Consumer Psychology, 10(1), 71–73.

    Google Scholar 

  29. Arumugam, V., Macdermid, J. C., & Grewal, R. (2013). Content analysis of work limitation, stanford presenteeism, and work instability questionnaires using international classification of functioning, disability, and health and item perspective framework. Rehabilitation Research and Practices, 2013, 1–11.

    Google Scholar 

  30. Cella, D., Yount, S., Rothrock, N., Gershon, R., Cook, K., Reeve, B., et al. (2007). The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years. Medical Care, 45(5 Suppl 1), S3–S11.

    PubMed  PubMed Central  Google Scholar 

  31. Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., et al. (2010). The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. Journal of Clinical Epidemiology, 63(11), 1179–1194.

    PubMed  PubMed Central  Google Scholar 

  32. Treadwell, M. J., Hassell, K., Levine, R., & Keller, S. (2014). Adult Sickle Cell Quality-of-Life Measurement Information System (ASCQ-Me): Conceptual model based on review of the literature and formative research. The Clinical Journal of Pain, 30(10), 902–914.

    PubMed  PubMed Central  Google Scholar 

  33. Keller, S. D., Yang, M., Treadwell, M. J., Werner, E. M., & Hassell, K. L. (2014). Patient reports of health outcome for adults living with sickle cell disease: development and testing of the ASCQ-Me item banks. Health and quality of life outcomes, 12(125), 1–11.

    Google Scholar 

  34. Tulsky, D. S., Kisala, P. A., Victorson, D., Carlozzi, N., Bushnik, T., Sherer, M., et al. (2016). TBI-QOL: development and calibration of item banks to measure patient reported outcomes following traumatic brain injury. Journal of Head Trauma Rehabilitation, 31(1), 40–51.

    Google Scholar 

  35. Tulsky, D. S., Kisala, P. A., Victorson, D., Tate, D. G., Heinemann, A. W., Charlifue, S., et al. (2015). Overview of the Spinal Cord Injury-Quality of Life (SCI-QOL) measurement system. Journal of Spinal Cord Medicine, 38(3), 257–269.

    Google Scholar 

  36. Law, M., Cooper, B., Strong, S., Stewart, D., Rigby, P., & Letts, L. (1996). The person-environment-occupation model: A transactive approach to occupational performance. Canadian Journal of Occupational Therapy, 63(1), 9–23.

    Google Scholar 

  37. Mallinson, T., & Hammel, J. (2010). Measurement of participation: intersecting person, task, and environment. Archives of Physical Medicine and Rehabilitation, 91(9), S29–S33.

    Google Scholar 

  38. Magasi, S., Wong, A., Gray, D. B., Hammel, J., Baum, C., Wang, C.-C., et al. (2015). Theoretical foundations for the measurement of environmental factors and their impact on participation among people with disabilities. Archives of Physical Medicine and Rehabilitation, 96(4), 569–577.

    Google Scholar 

  39. Heinemann, A. W., Magasi, S., Hammel, J., Carlozzi, N. E., Garcia, S. F., Hahn, E. A., et al. (2015). Environmental factors item development for persons with stroke, traumatic brain injury, and spinal cord injury. Archives of Physical Medicine and Rehabilitation, 96(4), 589–595.

    Google Scholar 

  40. Hahn, E. A., DeVellis, R. F., Bode, R. K., Garcia, S. F., Castel, L. D., Eisen, S. V., et al. (2010). Measuring social health in the patient-reported outcomes measurement information system (PROMIS): item bank development and testing. Quality of Life Research, 19(7), 1035–1044.

    PubMed  PubMed Central  Google Scholar 

  41. Toyinbo, P. A., Vanderploeg, R. D., Donnell, A. J., Mutolo, S. A., Cook, K. F., Kisala, P. A., et al. (2016). Development and initial validation of military deployment-related TBI quality-of-life item banks. The Journal of Head Trauma Rehabilitation, 31(1), 52–61.

    PubMed  PubMed Central  Google Scholar 

  42. Carlozzi, N. E., Victorson, D., Sung, V., Beaumont, J. L., Cheng, W., Gorin, B., et al. (2014). HD-PRO-TRIAD™ validation: A patient-reported instrument for the symptom triad of Huntington’s Disease. Tremor and Other Hyperkinetic Movements, 4, 223.

    PubMed  PubMed Central  Google Scholar 

  43. Schrag, A., Jahanshahi, M., & Quinn, N. (2000). What contributes to quality of life in patients with Parkinson’s disease? Journal of Neurology, Neurosurgery and Psychiatry, 69(3), 308–312.

    CAS  PubMed  PubMed Central  Google Scholar 

  44. Naess, H., Waje-Andreassen, U., Thomassen, L., Nyland, H., & Myhr, K.-M. (2006). Health-related quality of life among young adults with ischemic stroke on long-term follow-up. Stroke, 37(5), 1232–1236.

    PubMed  PubMed Central  Google Scholar 

  45. Weintraub, S., Dikmen, S. S., Heaton, R. K., Tulsky, D. S., Zelazo, P. D., Bauer, P. J., et al. (2013). Cognition assessment using the NIH Toolbox. Neurology, 80, S54–S64.

    PubMed  PubMed Central  Google Scholar 

  46. Cieza, A., Hilfiker, R., Boonen, A., Chatterji, S., Kostanjsek, N., Üstün, B. T., et al. (2009). Items from patient-oriented instruments can be integrated into interval scales to operationalize categories of the International Classification of Functioning, Disability and Health. Journal of Clinical Epidemiology, 62(9), 912–921.

    PubMed  PubMed Central  Google Scholar 

  47. National Institute of Neurological Disorders and Stroke (NINDS) (2015). User manual for the Quality of Life in Neurological Disorders (Neruo-Qo) Measures, Version 2.0. Retrieved March 16, 2017, from http://www.healthmeasures.net/images/neuro_qol/Neuro-QOL_User_Manual_v2_24Mar2015.pdf.

  48. Morgan, S. J., Kelly, V. E., Amtmann, D., Salem, R., & Hafner, B. J. (2016). Self-reported cognitive concerns in people with lower limb loss. Archives of Physical Medicine and Rehabilitation, 97(6), 912–918.

    PubMed  PubMed Central  Google Scholar 

  49. Sneeuw, K., Aaronson, N., De Haan, R., & Limburg, M. (1997). Assessing quality of life after stroke: the value and limitations of proxy ratings. Stroke, 28(8), 1541–1549.

    CAS  PubMed  PubMed Central  Google Scholar 

  50. Brod, M., Stewart, A. L., Sands, L., & Walton, P. (1999). Conceptualization and measurement of quality of life in dementia: The dementia quality of life instrument (DQoL). The Gerontologist, 39(1), 25–36.

    CAS  Google Scholar 

  51. Kozlowski, A. J., Singh, R., Victorson, D., Miskovic, A., Lai, J.-S., Harvey, R. L., et al. (2015). Agreement between responses from community-dwelling persons with stroke and their proxies on the NIH Neurological Quality of Life (Neuro-QoL) short forms. Archives of Physical Medicine and Rehabilitation, 96(11), 1986–1992.

    PubMed  PubMed Central  Google Scholar 

  52. Bickenbach, J., Cieza, A., Rauch, A., & Stucki, G. (2012). ICF core sets: Manual for clinical practice. ICF Research Branch: Hogrefe Publishing.

    Google Scholar 

  53. Macdermid, J. C. (2014). ICF linkage indicator definitions. Retrieved March 14, 2017, from http://srs-mcmaster.ca/wp-content/uploads/2015/04/ICF-linkage-indicators_Final-to-Post.pdf.

  54. Kibort, A. (2007). Extending the applicability of lexical mapping theory. In M. Butt & H. K. King (Eds.), Proceedings of the LFG07 Conference. Stanford: CSLI Publications.

    Google Scholar 

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Acknowledgements

This study was supported by the National Institute on Disability, Independent Living, and Rehabilitation Research, the Administration on Community Living, the U.S. Department of Health and Human Services to the Rehabilitation Institute of Chicago (Grant No. H133B090024) and to Washington University in St. Louis (Grant No. H133F140037), by the Craig H. Neilsen Foundation to Washington University in St. Louis (Grant No. 290474), and by the General Research Grant, Research Grant Council of Hong Kong (Grant No. 15104415) to The Hong Kong Polytechnic University. The contents do not necessarily represent the policies of the U.S. Department of Health and Human Services, the Craig H. Neilsen Foundation, or The Hong Kong Polytechnic University. We would like to acknowledge Megen Devine, MA and Ojoyi Agbo, BS at Washington University School of Medicine for their editorial assistance.

Author information

Affiliations

  1. Program in Occupational Therapy & Department of Neurology, Washington University School of Medicine, 4444 Forest Park Ave, Campus Box 8505, St. Louis, MO, 63108, USA

    Alex W. K. Wong

  2. Program in Occupational Therapy, Washington University School of Medicine, St. Louis, MO, USA

    Stephen C. L. Lau

  3. Department of Medical Social Science & Center for Patient-Centered Outcomes, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    David Cella

  4. Departments of Medical Social Science & Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Jin-Shei Lai

  5. College of Rehabilitation Medicine, Fujian University of Traditional Chinese Medicine, Fuzhou, Fujian, China

    Guanli Xie & Lidian Chen

  6. Department of Rehabilitation Sciences, The Hong Kong Polytechnic University, Hong Kong SAR, China

    Chetwyn C. H. Chan

  7. Department of Physical Medicine and Rehabilitation, Northwestern University Feinberg School of Medicine & Center for Rehabilitation Outcomes Research, Rehabilitation Institute of Chicago, Chicago, IL, USA

    Allen W. Heinemann

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  1. Alex W. K. Wong
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  2. Stephen C. L. Lau
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  3. David Cella
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  4. Jin-Shei Lai
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  8. Allen W. Heinemann
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Corresponding author

Correspondence to Alex W. K. Wong.

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Wong, A.W.K., Lau, S.C.L., Cella, D. et al. Linking of the quality of life in neurological disorders (Neuro-QoL) to the international classification of functioning, disability and health. Qual Life Res 26, 2435–2448 (2017). https://doi.org/10.1007/s11136-017-1590-9

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Keywords

  • Outcomes assessment (Healthcare)
  • ICF
  • Quality of life
  • Neurological disorders
  • Rehabilitation