NSCIBD Investigator Initiated Studies
NSCIBD Program Clinical Database
For future research projects, we would like to have access to a database of patient data that has already been collected. If patients are interested in providing their personal health information to this database, we would collect consent. Signing up to be part of this database is entirely voluntary and refusal to include your information will not affect patient care in any way. Research studies may be conducted using the information contained in the database/registry. Please let our research group know if you would be interested in having your health data copied to our research database.
IBD Strong Peer 2 Peer
People diagnosed with inflammatory bowel diseases (IBD) endure heightened levels of emotional and mental stress. IBD-associated psychological distress is particularly common at initial diagnosis, during disease flares, before surgery, and during transitions of care. Access to evidence-based psychological interventions and emotional support has been identified as a major care gap by IBD patients. Few patients are asked about psychological distress in routine clinical care and that even if asked, access to mental health care is limited. Despite the clear effect of mental health programs, and the positive effect of social support on self-management and quality of life, there are not many of these programs available. Peer support within healthcare is defined as a person providing emotional and informational support to another person living with a similar chronic illness.
The aim of this study is to improve access to support for mental distress and self-management, through the usage and evaluation of the IBD Strong Peer2Peer program. IBD Strong Peer2Peer is a peer lead program for IBD-related mental distress and self-management.
IBD and Exercise
Research in inflammatory bowel disease (IBD) has shown physical activity to have a positive impact on anxiety, depression, fatigue, and quality of life. However, whether sedentary time (e.g., sitting and watching TV) and physical activity interact to impact these outcomes is unknown for people living with IBD. For example, studies in other chronic diseased populations (lupus, cancer) have shown that replacing 10 to 60 minutes per day of sedentary time with 10 to 60 minutes per day of moderate to vigorous physical activity is associated with better lower body muscular function, less fatigue, and lower blood pressure. Further, people who engage in low levels of sedentary time and high levels of moderate to vigorous physical activity have been shown to have more favorable health outcomes (e.g., better cholesterol) compared to people who have high levels of sedentary time and low levels of moderate to vigorous physical activity.
This study will see if decreasing sedentary time and increasing moderate to vigorous physical activity will impact IBD-related outcomes (e.g., fatigue, quality of life, inflammation).
Vaccine Patient Focus Group
The recent rise of diseases caused by viruses that could be prevented by vaccines in patients with inflammatory bowel disease (IBD) highlights the need to educate doctors, nurses and patients about the important role of immunization. People living with IBD are at risk of these types of diseases (i.e. chickenpox, influenza, rubella, shingles, etc.) because IBD drugs can reduce the immune response and how well some vaccine work, and that IBD itself can cause malnutrition leaving people vulnerable to these diseases. People with IBD on immune suppressing medicine are at increased risk of catching these contagious viruses but still, vaccination uptake among patients with IBD is low. There are many reasons people with IBD are not receiving vaccines Some patients may not know how well the vaccine will work, worry that vaccination may trigger an IBD flare or other side effects, or may have no direct recommendation from their healthcare provider for certain vaccines. There may be many barriers that stop patients from getting their routine vaccines. Previous research has explored barriers from the doctor's perspective, but very few studies have explored this from the perspective of the patient.
Our study aims to capture these barriers and assess patients' concerns and beliefs surrounding vaccination. Understanding the reasons why IBD patients are not receiving vaccines will help to design initiatives and interventions to improve vaccination rates for IBD patients in the future
Assessing stakeholder interest in a virtual dietitian-led Celiac service
The aim of this study is to find the barriers and enablers of providing patient-centered care to people with Celiac disease. A potential strategy is a dietitian-led virtual service. People with Celiac disease referred to the gastroenterology clinic at the QE II Health Sciences Center will be asked to take part in a semi-structured interview. Interview questions will ask about their personal experience in living with Celiac disease and if they received the information and support they needed. We will ask what makes it easier and harder to learn about and follow a gluten free diet. The interview will also ask about celiac knowledge to better learn what they need to learn and the best way to provide this information. We will ask patients and healthcare providers their opinion on a virtual dietitian-led celiac service. We will conduct group interviews with care providers (primary care providers, gastroenterologists, and dietitians) to understand the challenges they face in caring for patients with Celiac disease and how the service could be improved. Based on the what we learn, we will create a dietitian-led celiac service including handouts for patients and processes for healthcare providers to follow.
IBD Post- Discharge Patient Experience Interviews
IBD Patients are often diagnosed when they experience a disease flare (the disease becomes active and the person experiences symptoms) and visit the hospital or ER for their symptoms. After a patient with newly diagnosed IBD or who had had IBD for years leaves the hospital after a flare, the patient is sent home and the patient has to navigate the disease and the challenges associated with it, on their own. This includes dietary restrictions, new medication regimes, and possible IBD-related emotional and mental distress. If patients aren't properly supported after they leave the hospital after a flare, it can lead to worsening of the disease, decline in mental health, and re-admission to hospital. With this study we will conduct patient interviews to better understand patient's experiences of accessing community supports and whether specific supports such as outpatient follow-up for IBD care, peer support groups, and nutrition and mental health resources that specialize in IBD, are things that patients would like and find valuable.
This study aims to understand the lived experience of adults living with Inflammatory Bowel Disease (IBD) in Nova Scotia who are transitioning between hospital and community and identify community-based supports that would improve the disease-related and general quality of life of adults living with IBD at times of hospital-to-community transition.
INTERESTED IN LEARNING MORE ABOUT THESE RESEARCH PROJECTS?
Please contact Natalie Willett (Research Associate) at:
Centre for Clinical Research
5790 University Avenue
Halifax, NS B3H 1V7
Office: 902-473-7074
Fax: 902-473-5889
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