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Chronically ill, one in three waits up to 10 years for a diagnosis

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Late diagnoses, long waits for checkups, failure to take charge. These are the problems that, according to Cittadinanzattiva, several chronically ill people in our country still face and that were denounced in the XX Report on chronicity policy of the non-profit organization. The title given to this release is “Fermi al Piano”, in reference to National Chronicity Planborn in 2016 with the aim of improving the management of chronic pathologies by setting up diagnosis, therapy and help (pdta) pathways for each chronic pathology, defining interventions in the different organizational contexts based on the needs of the patient (primary care , territorial specialist and hospital), and the integration of health services with social services.

“Stop at the Floor”

“The plan has not yet been implemented throughout the national territory and there is no monitoring of the envisaged objectives,” Anna emphasizes Lisa Mandorino, general secretary of Cittadinanzattiva. The data comes from interviews conducted between September and October with 871 chronic and rare disease patients and 86 chairmen of chronic and rare patient associations. For almost 36% of the persons represented, the measures foreseen in the plan are still not applied and for 15% they are only applied in certain regions. According to those interviewed, the level of compliance with the plan in Lombardy and Veneto is 56%, in Emilia Romagna 50%, in Piedmont and Tuscany 46.9%, Lazio 43.8%, Puglia 31.3%, Liguria 25%, 21.9 % Marche, 18.8% Campania, 9.4% Abruzzo, Sardinia, Sicily and Umbria, 3.1% Basilicata, Calabria and Molise. The other regions are not mentioned in the answers.

Pathology management

With regard to the implementation of the diagnosis and treatment pathways (pdta), one association in three believes that there is no model for mastering the disease. In concrete terms, 70% of associations are present in Lombardy, more than 52% in Tuscany, Veneto and Emilia-Romagna, almost 48% in Lazio, 35% in Piemonte and Puglia, 30% in Marche, 26% in Abruzzo, 22% in Campania, 17% in Sicily, 13% in Molise and Umbria, about 9% in Basilicata and Calabria and 4.3% in Sardinia. In addition, only 39% of the patients interviewed indicate that they have been treated in a center that is part of the national network for rare diseases.

Chronic diseases and late diagnoses

In Italy, according to an estimate by Istat, referring to 2021, four out of ten Italians will have at least one chronic disease and two out of ten will have at least two. The most common disease is hypertension, followed by osteoarthritis and arthritis, allergic diseases, osteoporosis, diabetes, chronic bronchitis, nervous diseases, heart diseases and stomach or duodenal ulcers. 34.4% of patients interviewed in the report waited more than a decade for a diagnosis from the onset of symptoms, in 19% of cases they waited two to ten years. The main reasons for the delays for two out of three patients are the lack of knowledge of the pathology by the general practitioner or paediatrician, for more than half they depend on the underestimation of the symptoms, for 45% due to the lack of specialized staff in the area and for almost 26% for waiting lists.

Long waiting times for visits

Another problem reported by the chronically ill is the difficulty of accessing initial specialist visits and diagnostic tests in about 60% of cases and, in 55% of cases, follow-ups due to long waiting times. About 43% of those interviewed reported excessive times, including to obtain recognition of civil disability or the care allowance. As a result, those seeking treatment can turn to the private sector. Especially when it comes to getting psychological support (75.7%). You also pay out of pocket for diagnostic tests and specialist visits (67%), prevention of complications and the purchase of parapharmaceuticals (51.4%), specialist visits or rehabilitation activities at home (47%), social assistance (41.4%) , adaptation of the home to the treatment needs (33%), necessary medicines not reimbursed by the National Health Service (37%), non-approved or inadequate prostheses and devices (35.7%), fees for residential or semi-residential (18 .6%), disposable medical devices (17%), assisted reproduction (11.4%). Finally, the report shows that about 11% of patients have used a telemedicine service in the past 12 months, with just over half (53%) using the electronic health record. “The point of view of patients and associations is important insofar as it reflects the concrete problems in accessing treatment and the real health needs that health authorities must take into account,” explains Tiziana Nicoletti, head of the national coordination of patient associations, chronically. sick. “In this regard, it is urgent that the Conference of State and Regions swiftly release the decree setting the rates for specialized outpatient and prosthetic services, ensuring essential levels of assistance,” concludes Mandorino.

Source: Corriere

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