Alex Al Khoury1, Bhairavi Balram2, Talat Bessissow3, Waqqas Afif3, Lorant Gonczi4, Maria Abreu1, Peter L Lakatos5,6,7. 1. University of Miami Miller School of Medicine, Gastroenterology, Miami, USA. 2. Division of Gastroenterology, University of Alberta, 130 University Campus NW, Edmonton, AB, Canada. 3. Division of Gastroenterology, Department of Medicine, McGill University, Montreal, Canada. 4. First Department of Medicine, Semmelweis University, Budapest, Hungary. 5. Division of Gastroenterology, Department of Medicine, McGill University, Montreal, Canada. Peter.Lakatos@muhc.mcgill.ca. 6. First Department of Medicine, Semmelweis University, Budapest, Hungary. Peter.Lakatos@muhc.mcgill.ca. 7. McGill University Health CentreMcGill University Health Centre, Montreal General Hospital, 1650 Ave. Cedar, D16.173.1, Montreal, QC, H3G 1A4, Canada. Peter.Lakatos@muhc.mcgill.ca.
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.
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.
Authors: Jean Frédéric Colombel; Paul Rutgeerts; Walter Reinisch; Dirk Esser; Yanxin Wang; Yinghua Lang; Colleen W Marano; Richard Strauss; Björn J Oddens; Brian G Feagan; Stephen B Hanauer; Gary R Lichtenstein; Daniel Present; Bruce E Sands; William J Sandborn Journal: Gastroenterology Date: 2011-06-30 Impact factor: 22.682
Authors: Silvio Danese; Matthieu Allez; Ad A van Bodegraven; Iris Dotan; Javier P Gisbert; Ailsa Hart; Peter L Lakatos; Fernando Magro; Laurent Peyrin-Biroulet; Stefan Schreiber; Dino Tarabar; Stephan Vavricka; Jonas Halfvarson; Séverine Vermeire Journal: Dig Dis Date: 2019-02-06 Impact factor: 2.404
Authors: Paul Rutgeerts; Christopher Gasink; Daphne Chan; Yinghua Lang; Paul Pollack; Jean-Frederic Colombel; Douglas C Wolf; Douglas Jacobstein; Jewel Johanns; Philippe Szapary; Omoniyi J Adedokun; Brian G Feagan; William J Sandborn Journal: Gastroenterology Date: 2018-08-29 Impact factor: 22.682