Construction and validation of the chronic acquired polyneuropathy patient-reported index (CAP-PRI): A disease-specific, health-related quality-of-life instrument

Kelly G Gwathmey; Mark R Conaway; Reza Sadjadi; Amruta Joshi; Carolina Barnett; Vera Bril; Eduardo Ng; William David; Karissa Gable; Jeffrey T Guptill; Lisa D Hobson-Webb; Jennifer Dineen; Michael Hehir; Thomas H Brannagan 3rd; Esther Byun; Margaret Adler; Ted M Burns

doi:10.1002/mus.24985

Construction and validation of the chronic acquired polyneuropathy patient-reported index (CAP-PRI): A disease-specific, health-related quality-of-life instrument

Muscle Nerve. 2016 Jun;54(1):9-17. doi: 10.1002/mus.24985. Epub 2015 Dec 29.

Authors

Kelly G Gwathmey¹, Mark R Conaway², Reza Sadjadi¹, Amruta Joshi¹, Carolina Barnett³, Vera Bril³, Eduardo Ng³, William David⁴, Karissa Gable⁵, Jeffrey T Guptill⁵, Lisa D Hobson-Webb⁵, Jennifer Dineen⁶, Michael Hehir⁷, Thomas H Brannagan 3rd⁸, Esther Byun⁹, Margaret Adler¹⁰, Ted M Burns¹

Affiliations

¹ Department of Neurology, University of Virginia, P.O. Box 800394, Charlottesville, Virginia, 22908, USA.
² Department of Public Health Sciences, University of Virginia, Charlottesville, Virginia, USA.
³ Division of Neurology, Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Ontario, Canada, USA.
⁴ Massachusetts General Hospital/Harvard Medical School, Boston, Massachusetts, USA.
⁵ Department of Neurology, Duke University Medical Center, Durham, North Carolina, USA.
⁶ Department of Neurology, Beth Israel Deaconess Medical Center/Harvard Medical School, Boston, Massachusetts, USA.
⁷ Department of Neurology, University of Vermont, Burlington, Vermont, USA.
⁸ Department of Neurology, Columbia University, New York, New York, USA.
⁹ Department of Neurology, Jerry L. Pettis VA Medical Center, Loma Linda, California, USA.
¹⁰ Department of Neurology, University of California, Los Angeles, California, USA.

Abstract

Introduction: Generic health-related quality-of-life (HRQOL) patient-reported outcome measures have been used in patients with chronic immune-mediated polyneuropathies. We have created a disease-specific HRQOL instrument.

Methods: The chronic acquired polyneuropathy patient-reported index (CAP-PRI) was developed and validated in multiple steps. Items were initially generated through patient and specialist input. The performance of the preliminary 20 items was analyzed via a prospective, 5-center study involving chronic immune-mediated polyneuropathy patients.

Results: Data analysis suggested modification to a 15-item scale with 3 response categories rather than 5. The final CAP-PRI was validated in another prospective, 5-center study. The CAP-PRI appeared to be a unidimensional outcome measure that fit the Rasch model in our multicenter cohort. It correlated appropriately with outcome measures commonly used in this patient population.

Conclusions: The CAP-PRI is a simple disease-specific HRQOL measure that appears to be useful for clinical care and possibly also for clinical trials. Muscle Nerve 54: 9-17, 2016.

Keywords: CAP-PRI; chronic inflammatory demyelinating polyneuropathy; immune-mediated polyneuropathy; patient-reported outcome; quality of life.

Publication types

Multicenter Study

MeSH terms

Female
Humans
Male
Polyneuropathies / diagnosis*
Polyneuropathies / psychology*
Prospective Studies
Psychometrics*
Quality of Life / psychology*
Reproducibility of Results
Retrospective Studies
Statistics, Nonparametric
Surveys and Questionnaires

Grants and funding

K23 NS085049/NS/NINDS NIH HHS/United States