LAS VEGAS -- Patients face multiple barriers in obtaining care for inflammatory bowel disease (IBD), researchers said here.
Communication challenges between patients and physicians, including lack of holistic support, particularly psych-social assistance, and diagnostic delays are all problems for IBD patients, according to an analysis of focus group discussions reported by Courtney Heisler, MSc, of Dalhousie University in Halifax, Nova Scotia, at the Crohn's & Colitis Congress.
Results showed, among other things, that patients experienced IBD symptoms up to 10 years before seeing a specialist. Two-thirds of participants said that, instead, they sought emergency room or walk-in clinic visits to a non-specialist for their IBD.
An estimated 2 million Americans have IBD, and Canada has the highest prevalence rates and age-adjusted incidence of IBD in the world, Heisler noted, and the clinical burden of IBD has continued to expand. Yet despite recognition by clinicians, that access to specialty care is suboptimal, and investigations into care experiences across various regions from the patient point of view have been lacking, noted Heisler.
Her group has undertaken a patient-oriented research project, incorporating a multidisciplinary team, to take into account relevant stakeholders while engaging the patient. The goal is to improve patient outcomes by addressing patient-identified priorities. Information found during these types of investigations can improve practice and healthcare systems, Heisler emphasized.
For the current study, investigators recruited 100 people (adult IBD patients and family members) who participated in 14 focus groups in eight different Canadian provinces at gastroenterology communities and clinics through Crohn's and Colitis Canada, social media, and IBD specialists. A patient research contributor and researchers co-designed the investigation and facilitated the group discussions.
It was part of the larger project in which Heisler's group sought participation from different stakeholders including gastroenterologists, patients, medical administrators, and referring doctors. However, the information presented here only focused on patient findings.
The current healthcare system's design doesn't take the patient into account, Heisler noted. "Incorporation of the patient voice is paramount to understanding and improve access to IBD care. Rapid access to specialty IBD care can translate into reductions in diagnostic delays, disease-related complications, and other negative health outcomes," she continued.
Other issues raised in the discussions included that patients often feel their thoughts are dismissed and that they become dependent on clinicians. In addition, care is not sufficiently holistic or integrated; emergency departments in particular, although they are a common entry point for IBD patients, are ill-equipped to deal with them despite presentation with acute symptoms, Heisler said.
Surveys helped to identify limited resources and delays as the main barriers to IBD care. In an effort to address these barriers, patients recommended having access to a community specialist, and finding ways to better communicate with their physicians, the investigators highlighted.
These qualitative findings also highlighted methods for overcoming these barriers like readily available nutritional and psychiatric help, healthcare navigation resources that provide liaison and continuity, providing holistic care in clinical practice, and engaging in more patient advocacy, said Heisler.
Improving quality of care in inflammatory bowel disease : What
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