Inflammatory bowel diseases: 200 thousand Italians suffer Consensus conference in Milan

(by Nicola Simonetti) The sick ask the medical class: multidisciplinary care with greater listening skills and support more suited to their needs. keyword is engagement

Chronic inflammatory bowel diseases (IBDs) are chronic inflammatory diseases of the intestine characterized by their progression from alternating phases of exacerbation and remission with progressive intestinal damage and are divided into two main types: Crohn's disease (MC) and Ulcerative colitis (CU).

More than 5 million people in the world are affected, 3 million in Europe, and more than 200mila in Italy. MICI can arise at any time in life but usually affects young people and the greatest incidence is documented between the 20 and the 40 years.

How is it possible to encourage optimal patient proactivity and involvement in their care pathway? How can it itself be an integral part of one's healing process? These are the questions to which the Consensus Conference on good practices of promoting Engagement and taking charge of the psycho-socio-welfare needs of people with MICI, wanted to give an answer. The scientific literature, in this regard, is converging, increasingly in recent years, towards the paradigm of engagement and proactivity on the part of the patient who would thus become co-protagonist together with the gastroenterologist, of his own path of improvement.

Today's official meeting, organized by the national association AMICI ONLUS, in collaboration with the Engage Minds Hub Research Center of the Catholic University of the Sacred Heart of Milan and with the Istituto Superiore di Sanità, in fact, wanted to lay the foundations to define recommendations that identify effective practices and tools to promote good practices in promoting the engagement and psycho-socio-welfare care of people with IBD, based on a very specific methodology: the standards defined by the NIH Consensus Development Program and the methodology described in the SNLG Manual of the Italian Higher Institute of Health.

“Consensus4IBD is the name we have chosen for this project” - says Enrica Previtali, president of AMICI Onlus - and from now on it will be the hashtag that will represent the value of what our association is carrying out for all MICI. The idea of ​​the Consensus arose from the fact that patients increasingly ask to be a central part of the treatment process and this centrality cannot be managed only by the referring clinician, or the gastroenterologist. What the recommendations, the objective of the project, will have to define is the best way to take care of the patient by a multidisciplinary team under the direction of the gastroenterologist, where the psychological component is well present and in support of the emotional and existential needs of patients. . In fact, we no longer want to feel considered as such, but as people with pathology and therefore with different needs. We believe that psychological support is essential to build acceptance of our condition as well as the degree of engagement and proactivity of the person himself towards the individual path aimed at improving life ".

The course of MICI is characterized by phases of activity interspersed with periods of remission, with a variable risk of complications over time. The chronic intestinal inflammatory process also exposes over time to an increased risk of colorectal cancer. The chronic and progressive evolution of the disease also presents a fluctuating trend that creates a condition of psycho-social distress in the person who has difficulty living normally due to the impairment of the quality of life in terms of personal, work and interpersonal well-being.

“The concept of multidisciplinarity for the management of patients affected by IBD” - said Alessandro Armuzzi, General Secretary of IG-IBD - “is one of the points currently involved in the National Scientific Society of reference (IG-IBD). For some time now, our educational activities, and in part also those of scientific research, have been aimed at enhancing the multidisciplinary approach, which see in engagement and psycho-socio-welfare management two fundamental aspects to be able to start developing and make this patient management model concrete. We therefore promptly joined this initiative, convinced that the “know-how” of the specialist dedicated to the management of patients suffering from Crohn's disease or ulcerative colitis can be a precious tool for the realization of this project ”.

From the WE CARE research carried out by the Engage Minds Hub research center in collaboration with the AMICI Onlus Association, it emerged that the quality of life is poor in 4 out of 10. Specifically, the aspect that is most compromised and disabling is the connected one. to the psycho-emotional sphere (49% of the interviewees declared a poor quality of life in terms of psycho-emotional well-being). The research also highlighted how there is an improvement in psycho-emotional functioning and other aspects related to the quality of life as the level of engagement increases. Adherence to therapies also improved according to the levels of engagement. Finally, satisfaction with the quality of the care received also varied according to the levels of patient engagement. For patients with IBD, quality care is characterized above all by the presence of listening and support skills within the care and assistance process; listening and support that are shared and suited to one's needs together with care that is adequate even in emergency situations; this aspect is a priority above all for people who show a low level of active involvement.

Researchers and clinicians agree on the importance of promoting patient engagement to increase the clinical effectiveness of interventions; there is widespread openness regarding the consideration of the socio-welfare and psychological needs of patients during their health care pathway. However, to date there is a lack of consensus on good practices for the promotion of patients' engagement with MICI and the taking into account of their socio-welfare and psychological needs.

"Although the scientific literature clearly highlights the impact of the disease on the quality of life and the psychological well-being of patients with IBD - notes Guendalina Graffigna, director of Engage Minds HUB, Catholic University of the Sacred Heart - the protocols for the intervention for psychosocial care and for the promotion of patient engagement they are still fragmented and with little evidence of efficacy reported in the scientific literature. Furthermore, the process of analyzing the treatment experience and the uncovered needs of patients with MICI in their management is still little systemic. This project, starting from the rigorous analysis of the available scientific evidences and from the promotion of the multidisciplinary exchange among experts aims to lay the foundations for an effective development of health policies in this area as well as for a concrete orientation of the clinical practice in the direction of a greater support psycho-social treatment of patients. "

The goals of the Consensus Conference are:

  • Identify the psycho-socio-care and psychological priority needs of people with MICI and define good practices for a relative social-care and psychological care
  • Clarify the most suitable moment in which the taking care of the socio-welfare and psychological needs of people with MICI should take place, defining levers and obstacles of the engagement process
  • Propose specific quality of life and monitoring indicators of the psycho-socio-welfare process and of the engagement promotion process (including socio-economic elements)
  • Promote a multidisciplinary consensus (and between health professionals, patients and their families) in order to establish recommendations and guidelines on the practice of promoting Engagement and taking care of the psycho-socio-welfare needs of people with MICI.

"There are many benefits provided by the implementation of the new model of care: an increase in the clinical, organizational and management appropriateness of the patient, a better integration between the units offering the network of services, the optimal link between various professional skills, better access to health services, a function of accompanying the patient in the management of all the obligations connected to the pathology ".

"My work as a surgeon specializing in diseases of the digestive system - underlines the Deputy Minister Pier Paolo Sileri - has led me to know firsthand the problems that patients suffering from chronic inflammatory bowel diseases experience, such as the difficulty in recognizing symptoms, to receive a diagnosis and to follow the therapy. It is therefore an absolute priority to define guidelines for the active involvement of people affected by these diseases. In fact, thanks to greater information, adherence to treatments increases, the patient's quality of life improves and costs for the National Health Service for drugs, examinations, visits and hospitalizations decrease ”.

The Consensus Conference is one of the methodological tools for building a governance tool for a sector or an area or a trend. In the case of MICI, a tool for the development of a therapeutic strategy aimed at improving the quality of life and therefore, also to contain health costs. Patients suffering from chronic pathologies in general and, in the specific case those affected by MICI, are usually considered great users of health services especially in consideration of the fact that their life expectancy is not significantly affected by the disease. Early onset and course, sometimes acute and recurrent, can lead to a substantial need for medical treatment. Exacerbations must be treated, more frequently with hospitalization, if mild, they can be treated on an outpatient basis, while medical examinations are aimed at monitoring the clinical course and therapy.

Inflammatory bowel diseases: 200 thousand Italians suffer Consensus conference in Milan