For 72% of patients, the disease affects their ability to work and over 1 in 2 is forced to ask for leave. The data from the Better survey presented today to the Ministry of Health by Amici Italia. Schillaci: “The increasing incidence of Mici in the middle of productive life and the growth of diagnoses in the pediatric age are factors that require interventions and concrete actions”
19 MAG –
Abdominal pain, exhaustion, bleeding, urgency to go to the bathroom even more than 10 times a day. The most common ailments among those suffering from inflammatory bowel disease are already difficult to bear and manage within the walls of one’s own home, but they can become a real nightmare at school or at work. It is not surprising that for almost 72% of patients the disease affects their ability to work and that over 1 in 2 is forced to ask for leave. Nor is it better for those who attend school or university: 72% of patients admit that they had difficulty attending classes regularly due to the disease and almost 80% were forced to be absent. At work and at school, there is often a lack of understanding and support that Italians with MICI badly need, not only to live better but also to produce more.
The picture that emerges from the Better survey – Welfare, Work, Legal and Social Needs for the care of patients suffering from Chronic Inflammatory Bowel Diseases – presented today to the Ministry of Health by Amici Italia on the occasion of a conference organized by the association, on the initiative of the Minister of Health, Horace Schillaci. The event was held today, World Day of these diseases, in the context of which numerous initiatives are promoted by patient organizations from different countries, under the direction of the European Federations of Crohn’s and Ulcerative Colitis Associations, Efcca (www.efcca.org), to which 46 national patient associations belong, including Amici Italia.
“The increasing incidence of inflammatory bowel disease, the onset of the disease in an age group ranging from 20 to 40 years, in the prime of an individual’s productive life, and the growth of diagnoses in childhood are factors that they require concrete interventions and actions to strengthen the ability to take care, in the right times and places – explains the Minister of Health, prof. Horace Schillaci –. We are doing this through the reform of territorial assistance for an appropriate management of chronic conditions, the full usability of the new essential levels of assistance, thanks to the approval of the tariff decree, and with measures aimed at facilitating and improving the quality of life as the provision of the simplification bill which makes the dematerialized prescription for chronic patients repeatable and valid for up to 12 months”.
“IBDs are chronic and recurrent pathologies, which present themselves with periods of exacerbation alternating with phases of remission and of which the cause is not known – he adds Valentina Ferracuti, President Amici Italia -. This definition includes Crohn’s disease, ulcerative colitis. It is estimated that there are around 250,000 people affected by these diseases in Italy and 5 million worldwide. The age in which they most frequently arise ranges from 20 to 40 years, but the onset can occur at any age, affecting men and women equally”.
“The goal of this morning’s event – he specifies Except Leo, director of AMICI Italia – is to highlight the importance of raising public awareness of IBD and providing information on available treatment options, patient rights and support services for people affected by these pathologies. To date, in fact, there are still many unexpressed needs of patients suffering from IBD that the Better survey immediately highlighted, together with any areas for improvement for patient care and support”.
“The incidence of these pathologies is clearly increasing and 1 out of 4 diagnoses concerns pediatric patients – he continues Claudius Roman, president of Sigenp (Italian Society of Gastroenterology, Hepatology and Pediatric Nutrition) -. From a geographical point of view, in addition to the countries historically involved such as Europe and North America, also the countries with the fastest growing economies are increasingly involved. It is therefore a global problem that is clearly worsening and in which environmental factors probably play a strong role, together with genetic predisposition”. “IBDs are in fact diseases with a ‘multifactorial’ genesis that are still partially known – adds Flavio Caprioli, secretary of the Italian Group for the Study of Inflammatory Bowel Disease (IG-IBD) -. The prevailing hypothesis is that of an abnormal immunological reaction by the intestine against antigens (for example the bacteria constituting the intestinal microbiota). This immunological imbalance can arise due to an altered interaction between the individual’s own genetic factors and environmental factors, the latter still not well identified”.
The investigation in detail
The survey involved a sample of 1,350 men and women with IBD, half of whom had Crohn’s disease and the remainder with ulcerative colitis. The results show that for almost 7 out of 10 patients, the disease has affected their lives. Not only for the disorders associated with it, but also for the daily difficulties they are forced to face both in accessing treatment and assistance and in supporting them at work and at school. The survey revealed that 20% of the sample find it difficult to contact their GP when in need and almost 30% find it difficult to be visited when they have an emergency. 17% even find it difficult to schedule a check-up, and this, in 7 out of 10 cases, depends on the long waiting lists. Furthermore, not all patients are satisfied with the healthcare they receive: almost 20% of the sample is not satisfied at all. Yet, for people with IBD, the need for care and assistance is very strong. The survey revealed that 24% of the sample needed at least one hospitalization, 15% between 5 and 10, and 13% more than 10 hospitalizations.
“That of a person with IBD can be a difficult and complicated life and it is much more so without adequate support at work and at school – explains dr. Lion -. The Better survey finds that the disease affects over 7 in 10 people’s ability to work and that more than 1 in 2 are not given the right support or are not involved in decisions about their working hours. But a few more tricks would be enough to improve their working situation, such as paid leave for medical visits and treatments, greater flexibility in working hours or the possibility of working at home”.
The situation is no better in schools or universities. As many as 8 out of 10 students needed to take days off due to illness and in over 20% of cases these absences do not allow them to follow the school program or teaching plan. “65% said they had not received support from teachers and school/academic staff to manage the disease – highlights Dr. Ferracuti -. And 1 in 2 had problems socializing with other students. Among the measures that could be useful for students there is certainly the support of teachers to follow the study program (10% of the sample thinks so) and also the possibility of attending lessons online. It would also help to improve access to the bathroom, given that 20% of the institutions frequented by the research participants have limitations”.
Among the problems that students and workers have in common, therefore young people and adults, there are difficulties in having a social life. Nearly 90% of the survey sample admitted having had to cancel social appointments due to inflammatory bowel disease, thus aggravating the already heavy psychological burden associated with the condition. In the face of this situation, 86% of patients have never participated in psychological support groups for patients with IBS.
“In addition to raising public awareness of the difficulties and needs of people with IBD, the objective of this day also aims to enhance the work of the institutions and the scientific community for this large army of patients – concludes Salvo Leone -. Furthermore, it represents a concrete example of how patient organisations, scientific societies and institutions can work together to address the challenges related to IBDs, improve the quality of life of patients and to ensure a sustainable future for the National Health Service, ensuring the universality , equality and equity in the treatment of pathologies, without neglecting any patient and providing them with the appropriate support and assistance”.
19 maggio 2023
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