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Digestive Diseases and Sciences
Published in: Digestive Diseases and Sciences 6/2022

21-05-2021 | Ulcerative Colitis | Review

Patient Perspectives and Expectations in Inflammatory Bowel Disease: A Systematic Review

Authors: Alex Al Khoury, Bhairavi Balram, Talat Bessissow, Waqqas Afif, Lorant Gonczi, Maria Abreu, Peter L. Lakatos

Published in: Digestive Diseases and Sciences | Issue 6/2022

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Abstract

Background

In this systematic review, our objective was to assess inflammatory bowel disease (IBD) patient preferences and perspectives relating to their disease diagnosis, treatment, knowledge needs and telemedicine.

Methods

This study was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Four databases and conference proceedings were searched between January 1, 1980, and May 1, 2020. The methodological quality of the included studies was assessed using the Standards for reporting qualitative research checklist.

Results

Our search identified 240 citations and 52 studies met the inclusion criteria. The major expectations of the patients are symptomatic and pain control, quality of life and normal endoscopy. Patients’ main concerns are access to information and healthcare, and shared decision making. At the time of diagnosis, patients expressed a greater need for knowledge about their IBD, preferentially by their treating gastroenterologist. The main treatment expectations in active disease are efficacy, safety and convenience. Patients are willing to accept relatively high risks of complications from medical therapy to avoid a permanent ostomy and to achieve durable remission. Patients are more interested in disease monitoring, research and development during the time of remission. Telemedicine and self-management with supervised e-health tools are feasible and acceptable amongst patients with IBD.

Conclusion

This systematic review demonstrates that patients with IBD expect more information about their disease process, shared decision making and symptom control. Further research is needed to help align patient and physician expectations in order to improve the quality of care provided to patients with IBD.
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Metadata
Title
Patient Perspectives and Expectations in Inflammatory Bowel Disease: A Systematic Review
Authors
Alex Al Khoury
Bhairavi Balram
Talat Bessissow
Waqqas Afif
Lorant Gonczi
Maria Abreu
Peter L. Lakatos
Publication date
21-05-2021
Publisher
Springer US
Published in
Digestive Diseases and Sciences / Issue 6/2022
Print ISSN: 0163-2116
Electronic ISSN: 1573-2568
DOI
https://doi.org/10.1007/s10620-021-07025-y

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