Four out of three Italians suffer from at least one chronic disease. One in four patients suffering from a rare disease must travel from region to get treatment
Late diagnoses, long waiting times for checks, deficiencies in taking charge. These are the problems that according to Cittadinanzattiva several chronically ill people still find themselves facing in our country and which were denounced in the XX Report on chronicity policies of the non-profit organization. The title given to this edition “Fermi al Piano”, with reference to National chronicity planborn in 2016 with the aim of improving the management of chronic pathologies through the construction, for each chronic pathology, of diagnostic-therapeutic-assistance pathways (pdta), which define interventions in the different organizational contexts on the basis of the patient’s needs (primary care , territorial specialist and hospital), and the integration of health services with social ones.
Stop at the floor
The Plan has not yet been implemented throughout the national territory and there is no monitoring of the foreseen objectives, underlines Anna Lisa Mandorino, general secretary of Cittadinanzattiva. The data comes from interviews carried out between September and October with 871 patients affected by chronic and rare diseases and with 86 presidents of associations of chronic and rare patients. For almost 36% of those represented, the measures envisaged in the plan still remain unapplied and for 15% they are applied only in some regions. In the perception of the interviewees the level of compliance with the Plan in Lombardy and Veneto of 56%, in Emilia Romagna of 50%, in Piedmont and Tuscany of 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 replies.
Management of the pathology
As far as the implementation of the diagnosis and treatment pathways (pdta) is concerned, one association out of three believes that there is no model for taking charge of the disease. Specifically, 70% of the associations are present in Lombardy, over 52% in Tuscany, Veneto and Emilia-Romagna, almost 48% in Lazio, 35% in Piedmont and Puglia, 30% in the Marches, 26% in Abruzzo, 22% in Campania, 17% in Sicily, 13% in Molise and Umbria, around 9% in Basilicata and Calabria and 4.3% in Sardinia. Furthermore, only 39% of the patients interviewed report being treated at 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 have at least one chronic disease and two out of ten have at least two. The most common disease is hypertension, followed by osteoarthritis and arthritis, allergic diseases, osteoporosis, diabetes, chronic bronchitis, nervous disorders, heart disease and gastric or duodenal ulcers. 34.4% of the patients interviewed in the Report report having waited more than ten years to receive a diagnosis from the onset of the first symptoms, in 19% of cases they waited from 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 family doctor or pediatrician, for over half they depend on the underestimation of the symptoms, for 45% for the lack of specialized personnel in the area and for almost 26% for waiting lists.
Long waits for visits
Another problem reported by the chronically ill is the difficulty of accessing, in about 60% of cases, the first specialist visits and diagnostic tests and, in 55% of cases, follow-ups due to long waits. Approximately 43% of the interviewees reported excessive times, also to obtain the recognition of civil invalidity or the carer’s allowance. With the result that those who can turn to the private sector for treatment. Especially when it comes to receiving 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 welfare support (41.4 %), adaptation of the home to treatment needs (33%), necessary medicines not reimbursed by the National Health Service (37%), unrecognized or insufficient prostheses and aids (35.7%), fees for residential or semi-residential (18.6%), disposable medical devices (17%), medically assisted procreation (11.4%). Finally, the Report shows that around 11% of patients in the last 12 months have used a telemedicine service, just over half (53%) use the electronic health record. The point of view of patients and associations is important to the extent that it reflects the concrete difficulties in accessing treatment and the real health needs that the health authorities must take into account” explains Tiziana Nicoletti, head of the national coordination of chronically ill associations . “In this regard, it is urgent that the State-Regions Conference quickly release the decree that establishes the tariffs for specialist outpatient and prosthetic services so that the essential levels of assistance are guaranteed, concludes Mandorino.
December 13, 2022 (change December 13, 2022 | 18:01)
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