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Quality of Life Research
Gepubliceerd in:

05-05-2017

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

Auteurs: Alex W. K. Wong, Stephen C. L. Lau, David Cella, Jin-Shei Lai, Guanli Xie, Lidian Chen, Chetwyn C. H. Chan, Allen W. Heinemann

Gepubliceerd in: Quality of Life Research | Uitgave 9/2017

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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.
vorige artikel Impact of marital status and comorbid disorders on health-related quality of life after cardiac surgery
volgende artikel Gratitude mediates quality of life differences between fibromyalgia patients and healthy controls
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Literatuur
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.PubMed
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.PubMed
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
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.PubMed
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
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.
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
8.
Bodenreider, O., & Stevens, R. (2006). Bio-ontologies: Current trends and future directions. Briefings in Bioinformatics, 7(3), 256–274.PubMed
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.CrossRefPubMed
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.PubMedPubMedCentral
11.
World Health Organization. (2001). International classification of functioning, disability and health. Geneva: World Health Organization.
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.PubMed
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.CrossRefPubMed
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.PubMed
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.PubMedPubMedCentral
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.PubMedPubMedCentral
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.PubMed
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.PubMed
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.PubMed
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.PubMed
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.PubMedPubMedCentral
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
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.
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.
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.PubMedPubMedCentral
26.
Embretson, S. E., & Reise, S. P. (2013). Item response theory. Mahwah: Lawrence Erlbaum Associates, Inc.
27.
Hambleton, R. K. (1991). Fundamentals of item response theory (Vol. 2). Amherst: Sage publications.
28.
Grayson, K., & Rust, R. (2001). Interrater reliability. Journal of Consumer Psychology, 10(1), 71–73.
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.
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.PubMedPubMedCentral
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.PubMedPubMedCentral
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.PubMedPubMedCentral
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.
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.PubMed
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.PubMedPubMedCentral
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.
37.
Mallinson, T., & Hammel, J. (2010). Measurement of participation: intersecting person, task, and environment. Archives of Physical Medicine and Rehabilitation, 91(9), S29–S33.PubMed
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.PubMed
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.PubMed
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.PubMedPubMedCentral
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
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.PubMedPubMedCentral
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.PubMedPubMedCentral
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
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.PubMedPubMedCentral
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
47.
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.PubMedPubMedCentral
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.PubMed
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.PubMed
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.PubMedPubMedCentral
52.
Bickenbach, J., Cieza, A., Rauch, A., & Stucki, G. (2012). ICF core sets: Manual for clinical practice. ICF Research Branch: Hogrefe Publishing.
53.
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.
Metagegevens
Titel
Linking of the quality of life in neurological disorders (Neuro-QoL) to the international classification of functioning, disability and health
Auteurs
Alex W. K. Wong
Stephen C. L. Lau
David Cella
Jin-Shei Lai
Guanli Xie
Lidian Chen
Chetwyn C. H. Chan
Allen W. Heinemann
Publicatiedatum
05-05-2017
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 9/2017
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-017-1590-9

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