“One in two people with rheumatological diseases, in the last year, has never been able to take advantage of assistance and care services in the area and 7 out of 10 people have never been contacted by the family doctor and by the specialist to be able to make a visit One in three people did not have access to a specialist clinic close to home and 4 out of 10 report the long waiting times to be seen by a specialist. Home visits by Mmg and specialists were impossible for 70 % of rheumatic patients and in 43% of cases, it was not possible for them to choose the specialist to be examined “. This was reported by Antonella Celano, president of Apmarr, citing the ‘alarming data’, which emerged from the 1st National Survey on Integrated Territorial Assistance (Ati) in rheumatology, conducted by the Apmarr Observatory in collaboration with EngageMinds Hub, a research center in psychology of consumption and health of the Catholic University of Milan (www.engagemindshub.com/), on a sample of 450 people with rheumatic diseases, the largest ever made on this topic.
The results were presented at the institutional conference organized by the National Association of People with Rheumatological and Rare Diseases (Apmarr), on the theme of integrated territorial care in rheumatology, which was held in Rome, at the Sala Zuccari of Palazzo Giustiniani.
“Ati for the more than 5 million Italians with rheumatological diseases, of which over 700 thousand are severely affected and disabling – explained Celano – today does not exist and needs a robust improvement intervention. We are tired of being treated like pinball balls that turn, often empty, in search of diagnosis, assistance and treatment, trying to build a personal assistance thread on our own. The structural and systemic aspects are the first problem to be solved in almost all cases of people with rheumatic diseases. However, it is necessary to adapt the new model of territorial assistance on the basis of the patient’s levels of engagement, that is, his level of active involvement in his own therapeutic project. What needs to be strengthened – concluded Celano – is the so-called ‘initiative health care’, the one that goes to the citizen and does not wait for him in the hospital, with new processes and codified and homogeneous platforms for rheumatological networks, using the enormous resources made available available from Mission 6 Health of the Pnrr.
“On the other hand, according to 50% of the sample, relations with general practitioners and specialists are good, but for 1 out of 2 the involvement in treatment choices should be improved and for 20% of the subjects interviewed there is also discrimination in access to treatment – explained Guendalina Graffigna – Full Professor of the Catholic University of the Sacred Heart and Director of EngageMinds Hub. Understanding the expectations and needs of the patient, not only from a medical-health point of view, but also in relation to their levels of involvement in the care, can allow better personalization of the assistance, also from a psycho-social point of view, by building ‘ cluster ‘of patients with shared experiences, needs and levels of engagement. Those who are more engaged will in fact benefit from the digital offer via app and telemedicine; However, the assistance for patients not engaged enough or even in blackout will be different, for which it will be enough to intervene on basic services such as assistance at home and proactivity ”.
“The pandemic has taught us how it is essential to reprogram health care activities, creating coordinated and integrated networks between the various structures and services that operate in the hospital and on the territory – declared Daniela Marotto, president of the Italian Rheumatologists College – CReI. We must look to the future by comparing ourselves with all the rheumatological patient’s skateholders in order not to repeat mistakes and study concrete operational solutions. The demand for current and future health is characterized in terms of increasing complexity, therefore multidisciplinary and multi-professional integration is essential if we set ourselves the goal of people’s well-being “.
“It is necessary – continued Marotto – to implement a synergistic strategic action that involves the local and hospital structures and that takes into account the different phases of the life of the person affected by a rheumatological disease, adapting to their changing and multiple needs. in a modern system of territorial care, it is telemedicine and ICT tools that strengthen therapeutic and care continuity, initiative medicine, patient empowerment and quality of care. The time has come to restart, collaborating and coordinating with all health and social workers to take care of our patients in the best possible way. We owe it to patients but we must also do it for professional ethics and deontology “.
“Early diagnosis is the essential element for the success of therapy for any disease – explained Florenzo Iannone, Managing Director of the Italian Society of Rheumatology (Sir) -. This is even more true for rheumatological diseases where the ‘window of opportunity’ from the onset of symptoms is estimated to be around 3 months. Taking action within this time frame means stopping the evolution and inducing remission of rheumatoid arthritis. All of us rheumatologists are aware of this, but, a sore point, in the last 2 years due to the Covid-19 pandemic for many new patients the “window of opportunity” has never opened. For these reasons, the Italian Society of Rheumatology plans to launch a national campaign on the diagnosis of ‘early arthritis’ to increase the sensitivity of the institutions and to reopen the window of hope ”.
On the occasion of the World Day of Rheumatic Diseases, Apmarr has signed a strategic partnership with Federfarma. “Pharmacies and pharmacists, with their proximity and professionalism, can be valid allies to which all citizens and in particular patients suffering from rheumatological and rare diseases can turn to receive concrete support in the management of the disease. The Pharmacy is present throughout the territory and allows quick and easy access to a wide range of health services. An example of how the pharmacy network can support people with rheumatological and rare diseases is the possibility, through distribution on behalf of (Dpc), to make the medicines they need available directly in the pharmacy closest to the patient’s home. , avoiding travel to reach the public health facility, which is often distant and open during limited hours. In this way the pharmacist can perform his role as professional dispenser of the drug in the best possible way and actively monitor the patient’s adherence to therapy “, said Roberto Tobia, national secretary of Federfarma.
Central to increasing patient engagement and building a true alliance between patients and the entire rheumatology ecosystem is health literacy. Citizens must be adequately informed and trained on the impacts of a rheumatological disease and this is why Apmarr has decided to create a commercial, conceived and produced by the creative agency Lorenzo Marini Group. “A multimedia campaign, with an empathic and emotional tone of voice, far from those stereotypes of pietism often typical of the sector – explained Lorenzo Marini, founder and president of the group of the same name -. The narration of a disease through images and photographs with attention to every detail. A symbolic tale that amazes, captures the attention and excites ”. The video of the Apmarr commercial will be broadcast online on the main sites of national newspapers and weeklies, on the TV circuits of 14 Italian airports, on the underground lines of Milan, Rome and Brescia, on the Milan buses and major railway stations, on the information sites. specialized and will land on all online and offline media in the coming weeks. The initiative is part of the Apmarr campaign for information and awareness on rheumatological diseases # diamoduemani21.