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Construction and validation of the chronic acquired polyneuropathy patient‐reported index (CAP‐PRI): A disease‐specific,health‐related quality‐of‐life instrument |
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| Authors: | Kelly G Gwathmey MD Mark R Conaway PhD Reza Sadjadi MD Amruta Joshi BA MS Carolina Barnett MD Vera Bril MD Eduardo Ng MD William David MD PhD Karissa Gable MD Jeffrey T Guptill MD MA Lisa D Hobson‐Webb MD Jennifer Dineen MD Michael Hehir MD Thomas H Brannagan MD III Esther Byun MD Margaret Adler MD Ted M Burns MD |
| Affiliation: | 1. Department of Neurology, University of Virginia, Charlottesville, Virginia, 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 |
