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Better stakeholder collaboration crucial to improving outcomes for patients with Inflammatory Bowel Disease

Article-Better stakeholder collaboration crucial to improving outcomes for patients with Inflammatory Bowel Disease

IBD is becoming an escalating global health problem.

Recent research by the medical journal BMC Gastroenterology has revealed an increase in the number of patients with Inflammatory Bowel Disease (IBD) in North Africa and the Middle East. In 2017, there were 166,000 reported cases; this rose to 220,000 in 2020 – and is expected to almost double to 500,000 by 2035. There are several reasons for this increase, ranging from the introduction of more effective diagnostic tools to lifestyle and environmental factors. Whilst the exact cause of the disease is unknown, obesity, stress, sleep patterns and smoking have all been identified as modifying the risk of developing IBD. One thing, however, is clear: IBD is becoming an escalating global health problem.

IBD is an umbrella term used to describe disorders that involve chronic inflammation of the digestive tract. The two most common types of IBD are Crohn’s disease and Ulcerative Colitis (UC). The former is characterised by inflammation of the lining of the entire digestive tract, including the deeper layers, whilst UC usually involves inflammation and ulcers along the superficial lining of the large intestine. Both conditions include symptoms such as diarrhoea, rectal bleeding, abdominal pain, fatigue, and weight loss. Therefore, upon diagnosis, patients must come to terms with the reality of having a lifelong, and when left unmanaged can be a debilitating condition.

The burden of having a chronic condition extends far beyond physical symptoms. For many patients, the unpredictable nature of IBD and its cycles of flares and remission, is as distressing as the bodily manifestations of the disease. Consequently, when treating a patient with IBD, it is essential to acknowledge the emotional turmoil that follows a diagnosis.

Disrupting patient lives

Dr. Shaker Bakkari, Consultant Gastroenterologist at King Saud Medical City, said: “We know that the true impact of these diseases goes much further than just the physical symptoms: stigma, isolation, decreased productivity, and psychological issues often affect people with immune-mediated diseases. IBD patient surveys found 40 per cent of patients said their intimate relationships were negatively affected, 52 per cent have had difficulty in academic settings, and around 25 per cent have had their working lives disrupted because of their condition."

The Covid-19 pandemic has caused significant disruption to patients with chronic illnesses and especially to those with IBD. A recent study published on PubMed revealed that many IBD patients were suffering from anxiety. Psychological symptoms are often co-morbid with IBD. This is because the condition can cause an immediate disruption to all aspects of a patient’s life - from work, to parenting, and from social and leisure activities to relationships. Consequently, the impact that the disease can have on a patient’s general sense of wellbeing is often profound. Add the uncertainty of the pandemic to the equation, and it is easy to comprehend why the past months have been an incredibly stressful time for patients who rely on ongoing medical care to manage their chronic conditions.

IBD symptoms usually appear during young adulthood, however, patients can often wait many years for a diagnosis due to limitations in correctly identifying the condition. Many symptoms of IBD can mimic those of other conditions leading physicians to misdiagnose patients with acute illnesses or more common disorders such as irritable bowel syndrome (IBS). In addition, achieving a firm diagnosis can be extremely challenging; this is due to the substantial number of tests and procedures that are usually required including blood tests, endoscopies, imaging studies, MRI scans and stool samples. Another factor that can impede a successful diagnosis is the stigma that is attached to IBD. Many patients are embarrassed to discuss their symptoms openly, even with their doctors, preventing sufferers from seeking medical assistance. Additionally, it can be difficult to explain the reality of the disease, and its impact, on family and friends since it produces few outwardly appearing symptoms.

Encouraging data exchange

One of the key challenges facing doctors and patients alike in Saudi Arabia is limited information about the manifestations of the disease in the country. Increased understanding translates to faster and more accurate diagnoses – and in turn more informed treatment decisions and better management of the disease. Experts are continuing to research the genetic factors that contribute to change the course of IBD; however, this requires extensive in-country and in-region population-based studies. Whilst this is not a feasible solution in the short term, there is a lot that the healthcare community can do to ensure that patients achieve a quicker diagnosis and more effective care.

One example is the Saudi Gastroenterology Association (SGA) which works closely with partners to encourage and enhance the exchange of important scientific thinking and research around IBD. Promoting public health education through patient support groups is another crucial objective of the group. IBD is often referred to as an invisible disease, however, its impact upon patients and their families certainly does not go unnoticed. Through concerted action, with wide stakeholder engagement, it is possible to not only provide an ecosystem that supports patients, but also to lead the way in developing more innovative treatment approaches to a condition that affects millions of people around the world.

Dr. Majid Almadi, President of the Saudi Gastroenterology Association, said: “Being diagnosed with Ulcerative Colitis or Crohn’s disease can be a lifechanging moment for many patients. The SGA looks to provide a forum to support the development of scientific thinking in gastroenterology in the Kingdom in collaboration with providers and experts in the field of IBD. We look to enhance the exchange of ideas and collaboration between relevant institutions at home and internationally for the betterment of treatment and to support public education programmes that provide hope to sufferers through increased awareness and more personalised and intuitive treatment plans.”

Managing IBD

The key to successfully managing the condition, both physically and mentally, is to find a healthcare team that is not only extremely experienced in diagnosing the condition but that have access to the most innovative diagnostic tools and treatment plans. There is no one-size-fits-all approach to dealing with IBD, however there are a wide range of treatments that can be tailored to suit the needs and complexities of individual cases. Whilst IBD is a life-long condition, it can be managed effectively with the right treatment plan.

Ongoing programmes of research and development are critical to educate healthcare providers and support patients. Janssen has sought to pioneer innovative science, finding new and more effective ways to transform the course of immune-mediated diseases and calm the inner battle waging within patients’ bodies. Collaborations lie at the heart of this approach in the Middle East, fostering a healthcare ecosystem across academia, government, and the private sector to positively impact patient outcomes. By bringing together doctors, nurses, patients, patient advocacy organisations, scientists, and policy makers, it is possible to ensure that people with immune-mediated diseases can benefit from the best treatments when they need them. By investing significantly in continuous medical education of doctors and care-providers, Janssen is able to bring together medical professionals across the different therapeutic areas to share their expertise and best practices.

The Peace Within is a Janssen commitment to help ease the battle that people living with immune-mediated diseases such as IBD suffer with. These diseases cause people’s bodies to fight against themselves which can result in a life of pain and discomfort unless proper treatment is sought. Collaborating with our partners including patient organisations such as the Saudi Gastroenterology Association, healthcare providers, scientists, and government entities, we strive to ensure that awareness, education, and the best possible treatment and research is available.

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