title: Construction and validation of the chronic acquired polyneuropathy patient-reported index (CAP-PRI): A disease-specific, health-related quality-of-life instrument.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Department of Neurology, University of Virginia, P.O. Box 800394, Charlottesville, Virginia, 22908, USA.
authors.forename: Kelly G
authors.initials: KG
authors.lastname: Gwathmey
authors.affiliation: Department of Public Health Sciences, University of Virginia, Charlottesville, Virginia, USA.
authors.forename: Mark R
authors.initials: MR
authors.lastname: Conaway
authors.affiliation: Department of Neurology, University of Virginia, P.O. Box 800394, Charlottesville, Virginia, 22908, USA.
authors.forename: Reza
authors.initials: R
authors.lastname: Sadjadi
authors.affiliation: Department of Neurology, University of Virginia, P.O. Box 800394, Charlottesville, Virginia, 22908, USA.
authors.forename: Amruta
authors.initials: A
authors.lastname: Joshi
authors.affiliation: 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.
authors.forename: Carolina
authors.initials: C
authors.lastname: Barnett
authors.affiliation: 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.
authors.forename: Vera
authors.initials: V
authors.lastname: Bril
authors.affiliation: 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.
authors.forename: Eduardo
authors.initials: E
authors.lastname: Ng
authors.affiliation: Massachusetts General Hospital/Harvard Medical School, Boston, Massachusetts, USA.
authors.forename: William
authors.initials: W
authors.lastname: David
authors.affiliation: Department of Neurology, Duke University Medical Center, Durham, North Carolina, USA.
authors.forename: Karissa
authors.initials: K
authors.lastname: Gable
authors.affiliation: Department of Neurology, Duke University Medical Center, Durham, North Carolina, USA.
authors.forename: Jeffrey T
authors.initials: JT
authors.lastname: Guptill
authors.affiliation: Department of Neurology, Duke University Medical Center, Durham, North Carolina, USA.
authors.forename: Lisa D
authors.initials: LD
authors.lastname: Hobson-Webb
authors.affiliation: Department of Neurology, Beth Israel Deaconess Medical Center/Harvard Medical School, Boston, Massachusetts, USA.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Dineen
authors.affiliation: Department of Neurology, University of Vermont, Burlington, Vermont, USA.
authors.forename: Michael
authors.initials: M
authors.lastname: Hehir
authors.affiliation: Department of Neurology, Columbia University, New York, New York, USA.
authors.forename: Thomas H
authors.initials: TH
authors.lastname: Brannagan
authors.affiliation: Department of Neurology, Jerry L. Pettis VA Medical Center, Loma Linda, California, USA.
authors.forename: Esther
authors.initials: E
authors.lastname: Byun
authors.affiliation: Department of Neurology, University of California, Los Angeles, California, USA.
authors.forename: Margaret
authors.initials: M
authors.lastname: Adler
authors.affiliation: Department of Neurology, University of Virginia, P.O. Box 800394, Charlottesville, Virginia, 22908, USA.
authors.forename: Ted M
authors.initials: TM
authors.lastname: Burns
mesh_terms: D005260:Female; D006801:Humans; D008297:Male; D011115:Polyneuropathies / Q000175:diagnosis* / Q000523:psychology*; D011446:Prospective Studies; D011594:Psychometrics; D011788:Quality of Life / Q000523:psychology*; D015203:Reproducibility of Results; D012189:Retrospective Studies; D018709:Statistics, Nonparametric; D011795:Surveys and Questionnaires
keywords: CAP-PRI; chronic inflammatory demyelinating polyneuropathy; immune-mediated polyneuropathy; patient-reported outcome; quality of life