Nurse practitioner Irina Nistor conducts research on discomfort experienced by people living with Crohn’s or colitis.
Pain is unfortunately a hallmark symptom experienced by people living with Crohn’s disease or ulcerative colitis. Studies estimate 50% to 70% of patients with inflammatory bowel disease (IBD) experience pain.
What about discomfort?
Pain and discomfort are two words often used together. This is not surprising, since they are part of the same symptom cluster (a group of symptoms that often occur together). Nevertheless, pain and discomfort are distinct symptoms. If a patient is in pain, they are likely uncomfortable as well. However, patients experiencing discomfort will not always experience pain. Even when pain is measured by clinicians and studied by scientists, discomfort is not always captured.
To help manage discomfort, researchers and clinicians first need to understand it – what causes it, how patients experience it, and what factors contribute to it. Previous research on discomfort has shown it is associated with factors such as limitations in achieving goals, precarious employment, anxiety and depression, avoidance of social events, and increased care costs. The ultimate goal of research on discomfort is to improve patients’ clinical outcomes and quality of life. This year, Irina Nistor, a nurse practitioner in gastroenterology and hepatology and PhD candidate at Queen’s University, is the recipient of a research grant that will help us reach that goal by first shedding light on patients’ experiences of discomfort.
New Research on IBD and Discomfort
Since 2016, Crohn’s and Colitis Canada, together with the Canadian IBD Nurses (CANIBD), has funded an annual nurse-led research project. The $15,000 research grant supports a small clinical research pilot project designed to improve patient care or quality of life. This year’s project will identify how frequently people living with Crohn’s or colitis experience discomfort.
As a nurse practitioner who has been caring for IBD patients for over fifteen years, Irina has witnessed firsthand the impacts pain and discomfort have on patients’ quality of life. “I am passionate about advocating for patient care and giving voice to patients and their needs,” says Irina. “The symptom of discomfort is pervasive, yet is little understood in IBD, and it lacks conceptual clarity, often being confounded with pain or other symptoms.”
Addressing Gaps in Research that Matter to Patients
Irina is exploring how frequently IBD patients experience discomfort and how it affects their physical, psychological, and social outcomes. She is conducting a systematic review and meta-analysis on discomfort in people with Crohn’s or colitis, meaning, she will analyze a large number of research studies describing discomfort in IBD patients. Her goal is to determine the incidence (the relative number of new cases) and the prevalence (the relative number of existing cases) of discomfort in people with Crohn’s or colitis. In addition to the incidence and prevalence, Irina will explore whether various factors, such as gender and IBD type, affect the symptom of discomfort.
Once we have a better understanding of patients’ experiences of discomfort, clinicians and policymakers will be able to improve strategies and models for IBD care. Irina shares, “This research will guide the exploration of symptom management strategies, and the implementation of multidisciplinary team model approaches with the intent to deliver holistic and improved quality of care. Recognizing the symptom burden in IBD and its substantial effect on healthcare resources is imperative to improving the quality of care for people living with IBD.”
Crohn’s and Colitis Canada and CANIBD congratulate Irina on receiving the 2019 Nursing-Led IBD Research Grant. The IBD community looks forward to seeing the results of her research on discomfort and the ways it can help improve clinical practice and patient outcomes.
Are you experiencing pain or discomfort? Speak with your healthcare provider and check out the educational resources about pain available through our MyGut app.
Learn more about the Canadian IBD Nurses (CANIBD) here.
CANIBD is a Canadian community of practice, a network for IBD nurses to share best practices. CANIBD offers several programs to nurses, including educational opportunities, mentoring programs, and financial support for research or education activities. One of these programs is an annual grant to fund an IBD nursing-led research project.
To learn more about the CANIBD Nursing-Led IBD Research Grant, click here.