Patient Experiences in the Management of Inflammatory Bowel Disease: A Qualitative Study

Abstract

Background Inflammatory bowel disease (IBD) can lead to substantial impairments of quality-of-life. Clinical guidelines and quality indicators aid physicians in practice but may not reflect the perspectives and experiences of patients with IBD. To address this, the objectives of this study were to understand patient experiences with IBD care and to explore priorities. Methods Based on a convenience sample of 36 participants, five focus groups were completed at four sites across Canada. Data were analyzed using a deductive thematic analysis approach to assess emergent themes and variability in participants’ experiences. Results Our results are organized by themes of structure, process and outcomes to illustrate common issues with respect to how care is organized in the healthcare system, how patients receive and experience care and how patients perceive the outcomes of their care. Our results frame a health systems quality approach that signal needed improvements in access to care, the need for innovation with respect to virtual medicine, the potential expansion of multidisciplinary team-based care and the importance of addressing the psychosocial dimensions for patients with IBD and their caregivers in order to better deliver patient-centred care. Conclusions The issues identified have the potential to impact priority areas in the system, IBD care delivery, and how outcomes can be improved by focusing on ‘lived experience’ and patient-centred care. The differing values and perspectives of all those involved in caring for patients with IBD underscore the importance of good communication with patients, caregivers and family members, as well as staying responsive to evolving needs.

Health Care Perspectives of Adult Patients with Lower Educational Attainment in Inflammatory Bowel Disease: A Qualitative Study

“…Similarities and differences were noted in comparing findings of the present study to those of our larger study (16). Similar findings included the barriers to receiving adequate care such as delayed diagnosis, long wait times for appointments, geographical and physical accessibility barriers, and physicians having insufficient knowledge of IBD, as well as inclusion of services provided by an ideal IBD clinic such as mental health support and non-traditional therapies.…”

“…The present study was undertaken to increase our understanding of the health care concerns of patients with IBD with less than a university degree who may be at risk for poor health outcomes. This study is an add-on to a larger pan-Canadian study aimed at increasing our understanding of what patients want from their IBD health care providers (HCPs) to improve the delivery of equitable high-quality care (16).…”

Experience of Disease Acceptance in Chinese Patients with Newly Diagnosed Crohn’s Disease: A Descriptive Qualitative Study

“…Many patients expressed anxiety prior to arriving at a diagnosis and often could not access the care that they needed until they received a formal diagnosis. 24 During the waiting period, almost all participants turned to internet search platforms for information about the disease. Research has shown that a higher percentage of internet information originates from commercial organizations or pharmaceutical companies, and their sources may be inaccurate or even misleading.…”

The 2023 Impact of Inflammatory Bowel Disease in Canada: Access to and Models of Care

“…A survey by the Canadian Medical Association suggests that individuals were satisfied with VC ( 92 ). Nationwide focus groups consisting of people with IBD offered insight into how they experienced VC ( 93 ). Telephone-based services were most common; many felt videoconferencing would have improved the interaction.…”