Anthony S Burns1,2,3, Jude J Delparte4, Sander L Hitzig5,6,7, John Shephard8,7, B Catharine Craven9,4,8. 1. Department of Medicine, Division of Physiatry, University of Toronto, Toronto, Canada. anthony.burns@uhn.ca. 2. Neural Engineering and Therapeutics Team, KITE (Knowledge Innovation Talent Everywhere), University Health Network - Toronto Rehabilitation Institute, Toronto, ON, Canada. anthony.burns@uhn.ca. 3. Brain & Spinal Cord Rehabilitation Program, Toronto Rehabilitation Institute - University Health Network, Toronto, Canada. anthony.burns@uhn.ca. 4. Neural Engineering and Therapeutics Team, KITE (Knowledge Innovation Talent Everywhere), University Health Network - Toronto Rehabilitation Institute, Toronto, ON, Canada. 5. St. John's Rehab Research Program, Sunnybrook Research Institute, Sunnybrook Health Sciences Centre, Toronto, Canada. 6. Department of Occupational Science & Occupational Therapy, University of Toronto, Toronto, Canada. 7. Rehabilitation Sciences Institute, University of Toronto, Toronto, Canada. 8. Brain & Spinal Cord Rehabilitation Program, Toronto Rehabilitation Institute - University Health Network, Toronto, Canada. 9. Department of Medicine, Division of Physiatry, University of Toronto, Toronto, Canada.
Abstract
STUDY DESIGN: Outcome measure item generation and reduction. OBJECTIVES: To develop a patient reported outcome measure (PROM) addressing the impact of neurogenic bowel dysfunction (NBD) on individuals living with traumatic or nontraumatic spinal cord injury (SCI). SETTING: Tertiary rehabilitation center in Toronto, Canada. METHODS: A PROM based on the International Classification of Functioning, Disability and Health (ICF) framework was developed using the following steps: (a) item generation, (b) item refinement through iterative review, (c) completion of items by individuals living with SCI and NBD followed by cognitive interviewing, and (d) further item refinement, item reduction, and construction of the preliminary PROM. RESULTS: Following initial item generation and iterative review, the investigative team agreed on 55 initial items. Cognitive interviewing, additional revisions, and item reduction yielded an instrument comprised of 35 items; while ensuring at least two items were retained for each of the 16 previously identified challenges of living with NBD following the onset of a SCI. Scoring for the preliminary PROM ranges from 0 to 140. CONCLUSIONS: A preliminary PROM informed by the ICF for assessing the impact of NBD post-SCI has been devised, which can be used to inform clinicians and decision-makers on optimal ways to treat this serious secondary health complication. Future work will assess the validity and clinimetric properties of the PROM.
STUDY DESIGN: Outcome measure item generation and reduction. OBJECTIVES: To develop a patient reported outcome measure (PROM) addressing the impact of neurogenic bowel dysfunction (NBD) on individuals living with traumatic or nontraumatic spinal cord injury (SCI). SETTING: Tertiary rehabilitation center in Toronto, Canada. METHODS: A PROM based on the International Classification of Functioning, Disability and Health (ICF) framework was developed using the following steps: (a) item generation, (b) item refinement through iterative review, (c) completion of items by individuals living with SCI and NBD followed by cognitive interviewing, and (d) further item refinement, item reduction, and construction of the preliminary PROM. RESULTS: Following initial item generation and iterative review, the investigative team agreed on 55 initial items. Cognitive interviewing, additional revisions, and item reduction yielded an instrument comprised of 35 items; while ensuring at least two items were retained for each of the 16 previously identified challenges of living with NBD following the onset of a SCI. Scoring for the preliminary PROM ranges from 0 to 140. CONCLUSIONS: A preliminary PROM informed by the ICF for assessing the impact of NBD post-SCI has been devised, which can be used to inform clinicians and decision-makers on optimal ways to treat this serious secondary health complication. Future work will assess the validity and clinimetric properties of the PROM.
Authors: Jennifer M Pires; Ana M Ferreira; Filipa Rocha; Luis G Andrade; Inês Campos; Paulo Margalho; Jorge Laíns Journal: Eur J Phys Rehabil Med Date: 2018-05-09 Impact factor: 2.874