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Development of a Patient Reported Experience and Outcomes Measure in Pediatric Patients Undergoing Bowel Management for Constipation and Fecal Incontinence

Halleran, Devin R.*,†; Lane, Victoria A.; Leonhart, Karen L.*; Fischer, Beth*; Sebastiao, Yuri*; Chisolm, Deena J.§; Levitt, Marc A.; Wood, Richard J.; Minneci, Peter C.*; Deans, Katherine J.*

Journal of Pediatric Gastroenterology and Nutrition: March 26, 2019 - Volume Publish Ahead of Print - Issue - p
doi: 10.1097/MPG.0000000000002348
Original Article: Gastroenterology: PDF Only
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Aims and Objectives: To develop a reliable and valid questionnaire that assesses patient reported experience (PREMs) and patient reported outcome measures (PROMs) of caregivers, families, and patients with severe constipation and fecal incontinence who failed conservative treatments and require a formal bowel management program (BMP).

Methods: A five step iterative process was utilized to ensure the reliability and validity of the final instrument. Parents or guardians of patients undergoing our week-long BMP were first asked 20 open-ended questions aimed at understanding the challenges in managing their child's condition. Responses were transformed into an initial 41 item survey comprised of two constructs relating to PREMs (24 items) and PROMs (17 items). Survey items were then administered to 359 parents and guardians undergoing BMP. Cognitive interviews were performed with 20 families to assess face validity and to further refine the survey. Instrument readability and reliability was assessed by Flesch-Kincaid and Crohnbach's α analyses. Items that weakly correlated were deleted to yield a final instrument that was both valid and reliable.

Results: A 33 statement survey was developed that encompasses important physical and emotional health concerns, quality of life, treatment success, financial considerations, schooling, parental employment, and social concerns. The final instrument, the Patient Reported Experience and Outcome Measure in a Bowel Management Program (PREOM-BMP), is divided into two separate constructs that assess important patient reported experience (22 items) and outcome (11 items) measures. Reliability analyses on the final instrument yielded a Crohnbach's α of .925.

Conclusion: The PREOM-BMP offers physicians and nursing professionals a brief and valid tool to measure the impact of a bowel management program on both the child and the family unit.

*Center for Surgical Outcomes Research, Center for Innovation in Pediatric Practice, The Research Institute and Department of Pediatric Surgery, Nationwide Children's Hospital, Columbus, Ohio

Center for Colorectal and Pelvic Reconstruction, Department of Surgery, Nationwide Children's Hospital, Columbus, Ohio

Leeds Children's Hospital, Great George Street, Leeds, United Kingdom

§Center for Population Health and Equity Research, Center for Innovation in Pediatric Practice, The Research Institute at Nationwide Children's Hospital, Columbus, Ohio

Address correspondence and reprint requests to Katherine J. Deans, Nationwide Children's Hospital, 611 Livingston Ave, Faculty Office Building, Suite 3A.3, Columbus, OH 43205 (e-mail: Katherine.deans@nationwidechildrens.org).

Received 19 October, 2018

Revised 8 March, 2019

Accepted 11 March, 2019

The authors report no conflicts of interest.

Funding: This work was supported by institutional funds from the Research Institute and Department of Surgery at Nationwide Children's Hospital.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal's Website (www.jpgn.org).

© 2019 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,