Improving Access to Care for IBD Patients: Strategies and Solutions

Introduction 

Inflammatory bowel disease (IBD) encompasses Ulcerative Colitis and Crohn’s disease, both of which cause chronic inflammation in the gut. IBD often leads to debilitating bowel symptoms, fatigue, joint pain, and significant impacts on both physical and mental health. Due to the nature of its symptoms, IBD is rarely discussed, and patients frequently encounter barriers to accessing necessary care. However, advances in technology, changes in health policy, and increasing awareness present opportunities to enhance care for IBD patients, potentially significantly improving their quality of life. 

What is inflammatory bowel disease?

Inflammatory bowel disease (IBD) is a chronic inflammatory condition of the gut, encompassing two main types: ulcerative colitis (UC) and Crohn's disease (CD). It causes symptoms such as abdominal pain, blood in stools, diarrhoea, fatigue, weight loss, and joint pain. Symptoms can vary from mild to severe and often fluctuate, depending on whether the condition is active or in remission. While medication can help manage symptoms and promote remission, there is currently no cure. 

IBD refers to both Crohn’s disease and ulcerative colitis: 

• Crohn’s Disease: Characterized by inflammation that can affect any part of the digestive tract, from the mouth to the anus, though it most commonly affects the small intestine
• Ulcerative Colitis: Causes chronic inflammation and ulcers in the large intestine and rectum

The exact cause of IBD remains unclear, but it is believed to be multifactorial, involving genetic predisposition, issues with gut bacteria, mucosal barrier dysfunction, and environmental and lifestyle factors.¹ Earlier this year, groundbreaking research was published that isolated a section of genetic code thought to be present in individuals with IBD.²

IBD has a significant impact on all areas of life, not just gut health. Individuals with IBD are more likely to experience anxiety and depression,³ as well as face challenges in relationships, social life, and work.⁴

Why is access to care so important for IBD patients?

Quick diagnosis and treatment for IBD are vital to reducing the risks of surgery, cancer, complications, and disease progression.⁵ The severity of the symptoms can leave people extremely unwell, with significant effects on their mental health, relationships, and ability to work. Unfortunately, there are many barriers, both within the UK and globally, that make accessing diagnosis and treatment for IBD extremely challenging. 

What are the barriers to care for IBD patients?

Geographic barriers

There is evidence suggesting that IBD sufferers living in rural areas have more difficulty accessing care than those in cities.⁶ These differences may be due to challenges in accessing specialist consultants, who tend to be based in urban centres, as well as increased costs associated with accessing care. As a result, those living in more remote areas often experience delays in diagnosis and receive less adequate care.⁷ Another significant barrier is the variation in available treatments across different regions, leading to some patients being unable to access newer and more effective therapies. 

Financial barriers

In some countries, high healthcare costs and inadequate insurance coverage can prevent patients from receiving care for their IBD. New treatments, such as biologics, are extremely expensive. As a result, insurance companies and government-backed healthcare systems (such as the NHS) often require patients to try and fail with cheaper medications before authorizing more effective, higher-cost treatments.⁸ These delays can lead to worsened health outcomes, increased rates of surgery, and longer hospital stays. 

Systemic barriers

Problems with healthcare infrastructure, such as long waiting lists or a lack of specialists, can delay patients from receiving the diagnosis and treatment they need. Despite NICE guidelines recommending that those with suspected IBD should see a consultant within four weeks, Crohn’s and Colitis UK recorded that 29% of IBD sufferers were waiting over a year for a diagnosis.⁹ Furthermore, the IBD UK report concluded that no IBD service met the staffing requirements to provide a robust service in 2019-20, with shortages of IBD nurses, pharmacists, and dietitians. 

Diagnosing IBD can also be challenging for primary care practitioners. Symptoms associated with IBD are often misdiagnosed as other conditions, leading to further delays in diagnosis. The wide range of presenting symptoms can make it difficult for clinicians to promptly identify patients with IBD, as symptoms are sometimes attributed to other conditions, such as irritable bowel syndrome, all of which can contribute to diagnostic delays.¹⁰

Personal barriers

IBD is a condition that suffers from low public awareness due to the stigma often attached to it. Bowel symptoms are uncomfortable to discuss, and as a result, the condition does not receive the publicity and awareness that other diseases might. Patients may be reluctant to talk about their problems, even with close friends and family, which can contribute to feelings of depression and anxiety. 

How can access to care for IBD be improved?

Telemedicine

The nature of IBD requires regular follow-ups after diagnosis as different treatment options are tried. This can be challenging in healthcare systems with long waiting lists and doctor shortages. The use of telehealth may offer benefits for IBD management by utilizing phone, video, text, and web-based services to communicate with patients. During the COVID-19 pandemic, many healthcare systems adopted telehealth in IBD clinics with positive results. Telehealth can help reduce costs, improve access to care, and has been shown to produce clinical outcomes similar to those of face-to-face appointments.¹¹

Integrated care models

Integrated collaborative care models are increasingly being used in the care of IBD patients. These models bring together consultants, allied health professionals, nutritionists, and IBD nurses to offer the best treatment package for patients. Patients themselves are often consulted, allowing them to highlight problems and set goals. With their experience of the condition, they provide unique insights into improving care and targeting areas for research. This multidisciplinary approach helps to improve patient outcomes, leading to reduced hospital admissions and surgeries.¹²

Health policy changes 

Perhaps due to the low public awareness and stigma attached to IBD, it is often overlooked in favour of higher-priority diseases such as cancer and heart disease. However, given the high costs associated with flare-ups, emergency admissions, and surgeries, investing in improved IBD care can enhance cost-effectiveness and health outcomes.⁹

Crohn’s and Colitis UK highlights three key areas where they would like to see changes:¹³

• Early Diagnosis: Delays in diagnosis can result in worsening health outcomes for IBD sufferers. 
• Better Care: IBD sufferers currently face long delays in starting treatment
• Recognition: Acknowledge IBD as a serious long-term condition that impacts all aspects of a sufferer’s life

Increasing awareness of the condition 

IBD as a condition has low public awareness and understanding, likely due to the discomfort associated with discussing bowel problems. This lack of understanding can significantly impact the physical and mental health of IBD sufferers, as well as more practical issues, such as the urgent need for access to toilets. Addressing these stigmas is important. A public health campaign to raise awareness, along with using social media and patient organizations to share the lived experiences of those with IBD, could be effective ways of improving awareness and understanding. 

Technological innovations

Advances in technology may offer significant opportunities for enhancing IBD treatment. Some new technologies, such as regular faecal calprotectin home monitoring (designed to check inflammation levels in the bowel), have already been introduced. These technologies allow for closer monitoring of a patient’s health status, cost savings, and higher patient satisfaction.¹⁴ The increased use of IT systems and mobile apps also presents opportunities for better symptom tracking, communication, and medication management in the future. 

Training for healthcare providers

IBD is a condition that is often poorly understood by general practitioners, which can lead to delays in the initial diagnosis. Continued education and increased awareness among healthcare providers are essential for ensuring timely diagnosis and improving patient outcomes. 

Summary

IBD is a condition that affects every aspect of a sufferer’s life. It causes often debilitating bowel symptoms and impacts their physical, mental, and social well-being. In addition to managing these challenges, IBD sufferers face many barriers to accessing the care they need. These barriers include systemic issues with healthcare systems, such as long waiting lists and diagnostic delays, difficulties accessing care due to geographical variations, and the stigma associated with the disease. Improving access to care for IBD is crucial. New technologies offer opportunities to address these issues, as do public awareness campaigns aimed at reducing stigma. Additionally, changing health policy to focus on better care and improving education for healthcare providers would contribute to significant improvements in IBD care.