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Inflammatory bowel diseases, half of patients cannot control the symptoms well

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Inflammatory bowel diseases, half of patients cannot control the symptoms well

Half of patients with inflammatory bowel diseases (IBD) are unable to optimally control their pathology with the available therapies. This is demonstrated by various studies in the literature and confirmed by IBD-Podcast, an observational study conducted in 10 countries including Italy, where it involved 220 patients with Crohn’s disease and ulcerative colitis: 54% of the first group of patients and 49 % of the second group falls within the definition of “suboptimal control”. A picture that is characterized by an unsatisfactory quality of life, manifestations of pathologies that also involve organs other than the intestine and the failure to achieve mucosal healing. With important repercussions on relationships and emotional well-being.

IBD cause often invisible disabilities and, at the same time, have a very heavy impact on the daily life of patients: these are pathologies that affect the gastrointestinal system and which alternate periods of remission and exacerbation. Symptoms, of varying severity, may include, among others: persistent diarrhea, abdominal pain, loss of appetite and weight.

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Early diagnosis limits the impact of the disease

“These are highly disabling pathologies that manifest themselves with symptoms that often frighten the patient and family. Many diagnoses, in fact, occur after the patient has gone to the emergency room following acute symptoms”, declares Massimo Fantini, Director of the Complex Gastroenterology Structure of the University Hospital of Cagliari which hosts the Center for research, diagnosis and treatment of IBD. “Early diagnosis is of fundamental importance as it can limit the impact of the disease on people’s lives, not only physically, but also emotionally and economically.” From the appearance of the first symptoms to the diagnosis, up to 5 years can pass, although in most cases, the diagnostic delay is now less than 6 months and is different between ulcerative colitis (shorter) and Crohn’s disease (often longer).

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The goals of therapy

“Today, thanks to scientific research, the objectives of treatment are focusing on clinical remission, on the ‘healing’ of the intestinal mucosa, and on the absence of disability, improving the quality of life without having to resort to surgery” underlines Alessandro Armuzzi , Head of the IBD Operational Unit – Chronic Inflammatory Bowel Diseases at IRCCS Istituto Clinico Humanitas. “In the last ten years we have witnessed a real revolution in the management of IBD. We must continue to commit ourselves to improving knowledge, with particular regard to the warning signs that should lead the patient to a gastroenterologist specialist.”

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Healing of the intestinal mucosa

The management of IBD is therefore evolving beyond symptom control and clinical remission, towards so-called mucosal healing, i.e. the restoration of the intestinal lining which is severely damaged in these patients. Studies have shown that the absence of ulceration is associated with better clinical outcomes and a lower risk of hospitalizations and surgery. In short, it is an important indicator of an improved state of health, beyond the relief of symptoms. To understand the conditions of the mucosa, an endoscopic examination is necessary but once healing has been achieved the situation can be kept under control by monitoring biomarkers, such as fecal calprotectin.

Patient awareness

During 2023, the AMICI ETS Association (National Association for Chronic Inflammatory Bowel Diseases) carried out a survey on more than 1000 patients which testifies to the knowledge of some key concepts. 95% of the sample, for example, said they knew that an improvement in symptoms does not mean mucosal healing at the intestinal level. More than half of the sample knows the difference between clinical remission and endoscopic remission. Approximately 8 out of 10 patients believe they have well understood the importance of the therapeutic choice.

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“The Patients Association plays a key role in the development of «Patient Health Engagement», that is, in generating awareness of the pathology. In fact, the majority of patients (+70%) declare the importance of support groups in the management and acceptance of the disease – concludes Salvo Leone, General Director of AMICI ETS, National Association for Chronic Inflammatory Bowel Diseases. Attention must remain focused on timely diagnoses, increasingly appropriate and personalized treatment paths that take into account the chronic condition. It is therefore essential to guarantee support, including psychological support, to this community of invisible patients who have the right to the best possible quality of life.”

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