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Gepubliceerd in: Quality of Life Research 11/2015

04-07-2015

Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular disease

Auteurs: Antoine Dany, Coralie Barbe, Amandine Rapin, Christian Réveillère, Jean-Benoit Hardouin, Isabella Morrone, Aurore Wolak-Thierry, Moustapha Dramé, Arnaud Calmus, Sabrina Sacconi, Guillaume Bassez, Vincent Tiffreau, Isabelle Richard, Benjamin Gallais, Hélène Prigent, Redha Taiar, Damien Jolly, Jean-Luc Novella, François Constant Boyer

Gepubliceerd in: Quality of Life Research | Uitgave 11/2015

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Abstract

Purpose

To build a questionnaire to assess health-related quality of life (HRQL) in patients suffering from slowly progressive neuromuscular disease (NMD) using item response theory (IRT).

Methods

A pool of 64 items and a validated questionnaire (WHOQOL-BREF) were administered to 159 patients recruited in eight NMD referral centers. Exploratory statistical analysis included methods derived from both IRT and classical test theory.

Results

We constructed a questionnaire named QoL–NMD which is composed of two general items and 24 items classified in three domains: (1) “Impact of Physical Symptoms,” (2) “Self-perception” and (3) “Activities and Social Participation.” Each domain has good psychometric properties (Cronbach’s alpha > 0.77, test–retest ICC > 0.81, Loevinger’s H > 0.41) and meets IRT assumptions. Comparison with the WHOQOL-BREF enabled assessing similarities and discrepancies with a generic questionnaire.

Conclusion

This study enabled the development of a new HRQL questionnaire specifically designed for slowly progressive NMD patients. The QoL–NMD is short enough to be used in clinical practice (26 items). The next steps will be to validate QoL–NMD by re-assessing psychometrics in an independent sample of patients and calibrate the IRT scoring system.
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Literatuur
1.
go back to reference Abresch, R. T., Carter, G. T., Jensen, M. P., & Kilmer, D. D. (2002). Assessment of pain and health-related quality of life in slowly progressive neuromuscular disease. American Journal of Hospice and Palliative Medicine, 19, 39–48.CrossRefPubMed Abresch, R. T., Carter, G. T., Jensen, M. P., & Kilmer, D. D. (2002). Assessment of pain and health-related quality of life in slowly progressive neuromuscular disease. American Journal of Hospice and Palliative Medicine, 19, 39–48.CrossRefPubMed
2.
go back to reference Carter, G. T., Han, J. J., Abresch, R. T., & Jensen, M. P. (2007). The importance of assessing Quality of Life in patients with neuromuscular disorders. American Journal of Hospice and Palliative Care, 23, 493.CrossRef Carter, G. T., Han, J. J., Abresch, R. T., & Jensen, M. P. (2007). The importance of assessing Quality of Life in patients with neuromuscular disorders. American Journal of Hospice and Palliative Care, 23, 493.CrossRef
3.
go back to reference Bottomley, A., Jones, D., & Claassens, L. (2009). Patient-reported outcomes: Assessment and current perspectives of the guidelines of the Food and Drug Administration and the reflection paper of the European Medicines Agency. European Journal of Cancer, 45, 347–353.CrossRefPubMed Bottomley, A., Jones, D., & Claassens, L. (2009). Patient-reported outcomes: Assessment and current perspectives of the guidelines of the Food and Drug Administration and the reflection paper of the European Medicines Agency. European Journal of Cancer, 45, 347–353.CrossRefPubMed
4.
go back to reference Speight, J., & Barendse, S. M. (2010). FDA guidance on patient reported outcomes A prompt for the industry to raise scientific standards. British Medical Journal, 340, c2921.CrossRefPubMed Speight, J., & Barendse, S. M. (2010). FDA guidance on patient reported outcomes A prompt for the industry to raise scientific standards. British Medical Journal, 340, c2921.CrossRefPubMed
5.
go back to reference Boyer, F., Novella, J. L., Bertaud, S., Delmer, F., Vesselle, B., & Etienne, J. C. (2005). Hereditary neuromuscular disease and multicomposite subjective health status: Feasibility, internal consistency and test-retest reliability in the French version of the Nottingham Health Profile, the ISPN. Clinical rehabilitation, 19(6), 644–653.CrossRefPubMed Boyer, F., Novella, J. L., Bertaud, S., Delmer, F., Vesselle, B., & Etienne, J. C. (2005). Hereditary neuromuscular disease and multicomposite subjective health status: Feasibility, internal consistency and test-retest reliability in the French version of the Nottingham Health Profile, the ISPN. Clinical rehabilitation, 19(6), 644–653.CrossRefPubMed
6.
go back to reference Boyer, F., Morrone, I., Laffont, I., Dizien, O., Etienne, J. C., & Novella, J. L. (2006). Health related quality of life in people with hereditary neuromuscular diseases: an investigation of test–retest agreement with comparison between two generic questionnaires, the Nottingham health profile and the short form-36 items. Neuromuscular Disorders, 16(2), 99–106.CrossRefPubMed Boyer, F., Morrone, I., Laffont, I., Dizien, O., Etienne, J. C., & Novella, J. L. (2006). Health related quality of life in people with hereditary neuromuscular diseases: an investigation of test–retest agreement with comparison between two generic questionnaires, the Nottingham health profile and the short form-36 items. Neuromuscular Disorders, 16(2), 99–106.CrossRefPubMed
7.
go back to reference Working Group on Health Outcomes for Older Persons with Multiple Chronic Conditions. (2012). Universal health outcome measures for older persons with multiple chronic conditions. Journal of the American Geriatrics Society, 60(12), 2333–2341.PubMedCentralCrossRef Working Group on Health Outcomes for Older Persons with Multiple Chronic Conditions. (2012). Universal health outcome measures for older persons with multiple chronic conditions. Journal of the American Geriatrics Society, 60(12), 2333–2341.PubMedCentralCrossRef
8.
go back to reference Ahlstrom, G. (1994). Consequences of muscular dystrophy: impairment, disability, coping and quality of life. PhD thesis dissertation, Uppsala University. Ahlstrom, G. (1994). Consequences of muscular dystrophy: impairment, disability, coping and quality of life. PhD thesis dissertation, Uppsala University.
9.
go back to reference Natterlund, B., & Ahlstrom, G. (2001). Activities of daily living and quality of life in persons with muscular dystrophy. Journal of Rehabilitation Medicine, 33(5), 206–211.CrossRefPubMed Natterlund, B., & Ahlstrom, G. (2001). Activities of daily living and quality of life in persons with muscular dystrophy. Journal of Rehabilitation Medicine, 33(5), 206–211.CrossRefPubMed
10.
go back to reference Vincent, K. A., Carr, A. J., Walburn, J., Scott, D. L., & Rose, M. R. (2007). Construction and validation of a quality of life questionnaire for neuromuscular disease (INQoL). Neurology, 68(13), 1051–1057.CrossRefPubMed Vincent, K. A., Carr, A. J., Walburn, J., Scott, D. L., & Rose, M. R. (2007). Construction and validation of a quality of life questionnaire for neuromuscular disease (INQoL). Neurology, 68(13), 1051–1057.CrossRefPubMed
11.
go back to reference Boyer, F. C., Tiffreau, V., Richard, I., & et al. (2011). Patient reported outcome in neuromuscular diseases: The QoL–NMD. Qualitative and quantitative generation of items. Annals of Physical and Rehabilitation Medicine, 54S, e238. Boyer, F. C., Tiffreau, V., Richard, I., & et al. (2011). Patient reported outcome in neuromuscular diseases: The QoL–NMD. Qualitative and quantitative generation of items. Annals of Physical and Rehabilitation Medicine, 54S, e238.
14.
go back to reference World Health Organization (WHO). (2001). The International Classification of Functioning, Disability and Health. Geneva. World Health Organization (WHO). (2001). The International Classification of Functioning, Disability and Health. Geneva.
15.
go back to reference Rayens, M. K., & Hahn, E. J. (2000). Building consensus using the policy Delphi method. Policy, Politics, & Nursing Practice, 1(4), 308–315.CrossRef Rayens, M. K., & Hahn, E. J. (2000). Building consensus using the policy Delphi method. Policy, Politics, & Nursing Practice, 1(4), 308–315.CrossRef
16.
go back to reference Skevington, S. M., Lotfy, M., & O’Connell, A. K. (2004). The World Health Organization’s WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A report from the WHOQOL group. Quality of Life Research, 13(2), 299–310.CrossRefPubMed Skevington, S. M., Lotfy, M., & O’Connell, A. K. (2004). The World Health Organization’s WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A report from the WHOQOL group. Quality of Life Research, 13(2), 299–310.CrossRefPubMed
17.
go back to reference Collin, C., Wade, D. T., Davies, S., & Horne, V. (1988). The Barthel ADL Index: A reliability study. International Disability Studies, 10(2), 61–63.CrossRefPubMed Collin, C., Wade, D. T., Davies, S., & Horne, V. (1988). The Barthel ADL Index: A reliability study. International Disability Studies, 10(2), 61–63.CrossRefPubMed
18.
go back to reference Sijtsma, K., & Molenaar, I. W. (2002). Introduction to nonparametric item response theory. Thousand Oaks, CA: Sage. Sijtsma, K., & Molenaar, I. W. (2002). Introduction to nonparametric item response theory. Thousand Oaks, CA: Sage.
19.
go back to reference Mokken, R. J. (1971). A theory and procedure of Scale Analysis. Berlin: De Gruyter.CrossRef Mokken, R. J. (1971). A theory and procedure of Scale Analysis. Berlin: De Gruyter.CrossRef
20.
go back to reference Wismeijer, A. A., Sijtsma, K., van Assen, M. A., & Vingerhoets, A. J. (2008). A comparative study of the dimensionality of the Self-Concealment Scale using principal components analysis and Mokken Scale analysis. Journal of Personality Assessment, 90(4), 323–334.CrossRefPubMed Wismeijer, A. A., Sijtsma, K., van Assen, M. A., & Vingerhoets, A. J. (2008). A comparative study of the dimensionality of the Self-Concealment Scale using principal components analysis and Mokken Scale analysis. Journal of Personality Assessment, 90(4), 323–334.CrossRefPubMed
21.
go back to reference Dinno, A. (2009). Exploring the sensitivity of Horn’s parallel analysis to the distributional form of random data. Multivariate Behavioral Research, 44(3), 362–388.PubMedCentralCrossRefPubMed Dinno, A. (2009). Exploring the sensitivity of Horn’s parallel analysis to the distributional form of random data. Multivariate Behavioral Research, 44(3), 362–388.PubMedCentralCrossRefPubMed
22.
go back to reference Cronbach, L. (1951). Coefficient alpha and the internal structure of tests. Psychometrika, 16(3), 297–334.CrossRef Cronbach, L. (1951). Coefficient alpha and the internal structure of tests. Psychometrika, 16(3), 297–334.CrossRef
27.
go back to reference Masters, G. N. (1982). A Rasch model for partial credit scoring. Psychometrika, 47(2), 149–174.CrossRef Masters, G. N. (1982). A Rasch model for partial credit scoring. Psychometrika, 47(2), 149–174.CrossRef
28.
go back to reference Samejima, F. (1969). Estimation of latent ability using a response pattern of Graded Scores. Psychometrika Monograph Supplement, 34, 1–94. Samejima, F. (1969). Estimation of latent ability using a response pattern of Graded Scores. Psychometrika Monograph Supplement, 34, 1–94.
29.
go back to reference Stevens, S. S. (1946). On the theory of Scale of Measurement. Science, 103(2684), 677–680.CrossRef Stevens, S. S. (1946). On the theory of Scale of Measurement. Science, 103(2684), 677–680.CrossRef
30.
go back to reference Thissen, D. (2000). Reliability and measurement precision. In H. E. Wainer (Ed.), Computerized adaptative testing (2nd ed., pp. 159–184). London: Lawrence Erlbaum. Thissen, D. (2000). Reliability and measurement precision. In H. E. Wainer (Ed.), Computerized adaptative testing (2nd ed., pp. 159–184). London: Lawrence Erlbaum.
31.
go back to reference Bos, I., Stallinga, A. H., Middel, B., Kuks, J. B. M., & Wynia, K. (2013). Validation of the ICF core set for neuromuscular diseases. European Journal of Physical and Rehabilitation Medicine, 49, 179–187.PubMed Bos, I., Stallinga, A. H., Middel, B., Kuks, J. B. M., & Wynia, K. (2013). Validation of the ICF core set for neuromuscular diseases. European Journal of Physical and Rehabilitation Medicine, 49, 179–187.PubMed
33.
go back to reference Cella, D., Yount, S., Rothrock, N., 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.PubMedCentralCrossRefPubMed Cella, D., Yount, S., Rothrock, N., 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.PubMedCentralCrossRefPubMed
Metagegevens
Titel
Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular disease
Auteurs
Antoine Dany
Coralie Barbe
Amandine Rapin
Christian Réveillère
Jean-Benoit Hardouin
Isabella Morrone
Aurore Wolak-Thierry
Moustapha Dramé
Arnaud Calmus
Sabrina Sacconi
Guillaume Bassez
Vincent Tiffreau
Isabelle Richard
Benjamin Gallais
Hélène Prigent
Redha Taiar
Damien Jolly
Jean-Luc Novella
François Constant Boyer
Publicatiedatum
04-07-2015
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 11/2015
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-015-1013-8

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