IBD Nurse-Centred Care Impact Report

Written by: CDHF

Updated: February 17th, 2023

Inflammatory bowel disease (IBD) is an umbrella term that includes ulcerative colitis (UC) and Crohn’s disease (CD), affects all or part of the digestive tract. It has an enormous impact on affected people, and Canada has one of the highest rates of IBD in the world. While we continue to make strides in treatment, we have not kept pace with the world’s best practices. IBD patients need us to do better.

This report grew out of an increasing awareness, supported by global clinical experience and guidelines, that Canada could provide significantly better care to IBD patients. There is a particular need and opportunity to expand the use of nurses with special training in IBD, who are currently not being used to their full potential. These nurses provide high value across several dimensions of IBD care, and studies continue to show that an enhanced role for IBD nurses improves the quality, outcomes, and cost-effectiveness of care.

To capture the value of IBD nurses and identify gaps in how this resource is being used in Canada, the Canadian Digestive Health Foundation (CDHF) conducted in-depth surveys and interviews with four groups of IBD stakeholders: nurses, gastroenterologists, patients, and caregivers.

This report summarizes the findings from this original research, presents relevant literature from other parts of the world, and makes recommendations for a national strategy to improve IBD care that includes an enhanced role for IBD nurses.

IBD prevalence & impact

Complications of IBD include bleeding, bowel rupture, malnutrition, and intestinal blockages. IBD also has a profound effect on mental health and quality of life.
Canada has one of the highest rates of IBD in the world. In 2018, about 270,000 Canadians were living with IBD—a figure expected to rise to 400,000 by 2030.¹
The disease typically strikes people in the prime of life and now affects Canadians of all origins, including groups previously considered to be at low risk.

IBD care gaps in Canada

Awareness of IBD and access to IBD services remain inconsistent across Canada.
Excessively long waits for patients to see a gastroenterologist and receive a diagnosis lead to treatment delays and poorer outcomes.
The shortage of IBD nurses leaves many patients without consistent access to expert care and support.
High-cost IBD medications must be managed more equitably and sustainably.
Mental health is not systematically or effectively incorporated into IBD management.

IBD nurses in Canada: feedback from stakeholders

Nurses play an integral role in IBD care, and specialized training increases their value.
The multifaceted care provided by IBD nurses may reduce the need for outpatient visits, emergency room visits, and hospitalizations, resulting in better care at a lower cost.
IBD nurses function as a connector between patients and other health providers.
IBD nurses significantly reduce the clinical and administrative burden on gastroenterologists.
IBD nurses are ideally positioned to provide patient education, and most take on this role with great enthusiasm.
IBD nurses have a holistic view of patients and provide care (including emotional support) that reflects this perspective.
Nurse-centred IBD care helps enhance quality of life, which is the treatment goal most valued by patients.
Many IBD nurses take on patient advocacy roles, helping patients secure IBD treatments and assisting them with life challenges.

Experience and evidence from other jurisdictions

Multidisciplinary models with high nurse involvement have been shown to improve clinical outcomes.
The second N-ECCO (European Crohn’s and Colitis Organization) consensus statement on IBD nursing care emphasizes the roles of nurses as educators, coordinators, advocates, and partners in care.
The therapeutic alliance between patient and nurse can enhance self-management of IBD.
Research has shown that integrating IBD nurses into the IBD care team can help expedite access to procedures, reduce hospital and clinic visits, and reduce medication costs.
People with IBD place a high value on the holistic treatment provided by IBD nurses.

Rationale and recommendations for a national strategy

Multidisciplinary teams have demonstrated value in managing chronic diseases. A national IBD strategy will help establish multidisciplinary teams (with nurses playing an integral role) as the standard of care, leading to more effective and efficient management of IBD across the country.
Canadian stakeholders hold IBD nurses in high esteem and view them as irreplaceable health professionals who provide a quality and style of care that other members of the IBD care team can’t easily replicate. A national strategy can help establish benchmarks for IBD nurses and the steps to achieve these benchmarks.
Centres of Excellence in Care, a recommended component of the strategy, can spearhead best practices, concentrate research, and facilitate data collection.
The proposed strategy rests on seven recommendations:
Recognize IBD as a national health priority
Invest proportionately in the IBD space
Establish standards for multidisciplinary IBD care
Increase the number of IBD nurses
Allocate funds to nurse-led IBD research
Create IBD Centres of Excellence
Develop a network of provincial/territorial IBD databases

These recommendations will enhance IBD care across Canada, while making judicious use of our health-system resources. Most importantly, a national strategy based on these recommendations will improve the quality of life for the large community of people with IBD, enabling them to live and participate in society to their full potential.

Read the Full IBD Nurse-Centred Impact Report

References