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

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.

The ulcerative colitis narrative Greece survey: patients’ and physicians’ perspective on quality of life and disease management

“…Medication preference is particularly important, and patients’ choices should be taken into account when we decide about the best medical therapy for them. Patients do seem to have a clear preference for oral administration (57%) and this is also supported by other studies [ 16 - 21 ], something that should be definitely taken into account if adherence to treatment needs to be increased.…”

Blockchain Enabled Patient-Centred Care for Inflammatory Bowel Disease: 4 Principles for Socio-Techical and Clinical Alignment

“…There are also ongoing surveillances due to increased risks of malignancies, thrombotic events and serious infections [1,2]. Active IBD has significant impact on quality of life, work productivity and financial burden on the health care system [1,3,4]. The management of IBD has evolved over the years, with objective endoscopic remission through tight disease monitoring shown to predict steroid free remission, reduced hospitalisation and surgical rates [4,5].…”

“…Active IBD has significant impact on quality of life, work productivity and financial burden on the health care system [1,3,4]. The management of IBD has evolved over the years, with objective endoscopic remission through tight disease monitoring shown to predict steroid free remission, reduced hospitalisation and surgical rates [4,5]. The medical model of care is well established in IBD and traditionally patients have been passive recipients of care.…”

“…More recently, patient-centred care has been promoted to improve patient wellbeing. The priorities from patients, are differ from traditional medical care [4,6,7]. The lack of adequate access to information and health care, symptom control and shared decision making are some of the key aspects that have been highlighted as patient concerns [4].…”

“…The priorities from patients, are differ from traditional medical care [4,6,7]. The lack of adequate access to information and health care, symptom control and shared decision making are some of the key aspects that have been highlighted as patient concerns [4]. Due to the chronic and complex nature of IBD, a health care model prioritizing effective communication, patient oriented interactions and shared decision making between patient and practitioner, has been shown to improve patient outcomes [8].…”