SIX out of ten rheumatologic patients are satisfied with how their disease is managed, but for half (48%) pain – one of the most frequent and feared symptoms of autoimmune diseases – is not treated adequately. For almost all (94%) the psychological aspect of the disease has a very strong impact. Add to this that nearly a quarter (23%) obtained a correct diagnosis after 4 or more years of onset. It is the photograph taken by the National Association of Rheumatic Patients – ANMAR Onlus in collaboration with the medical specialists of the CAPIRE Observatory, who conducted an online survey. The results were presented in a webinar made possible with the non-conditioning support of Lilly.
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Pain and psychological impact
“Pain and psychological impact are two fundamental aspects linked to rheumatological diseases, but they are still underestimated”, he says Silvia Tonolo, President of ANMAR Onlus: “It should not be forgotten that many diseases affect men and women of working age who are not always able to continue with their duties precisely because of their health conditions. Often it is not possible to manage pain on an outpatient basis, the patient is left alone and dangerous self-management can occur ”. A situation – ANMAR denounces – worsened since the pandemic broke out, which made contacts between patients and doctors more difficult, and which requires legislative interventions. “Making the measures established by Law 38/10 effective throughout the national territory (on palliative care and pain therapy, ed.) Must be one of the priorities of the Italian social and health institutions”, he continues Rossana Boldi, Vice-President of the XII Social Affairs Commission of the Chamber: “And we need to intervene on the training of both specialists and, above all, general practitioners, who interface with patients and who must be able to intercept the symptoms of rheumatological diseases”.
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There are drugs, but they are not always accessible
Pain is one of the prevailing aspects of the most common pathologies such as rheumatoid arthritis or spondyloarthritis: “It does not cause injury or serious damage to organs – underlines Mauro Galeazzi, Scientific Head of the CAPIRE Observatory and President Emeritus of the Italian Society of Rheumatology – but it can be unbearable and make even the most trivial actions of everyday life impossible. Today we have extraordinarily effective analgesic drugs available but they are not always accessible to patients, especially in some regions of the peninsula “.
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“Severe pain is one of the main unmet needs of rheumatological patients”, concludes Francesco Ciccia, Professor of Rheumatology at the University of Campania Luigi Vanvitelli: “Closely linked to this symptomatology there is also the theme of late diagnosis: too long a time to detect the disease also negatively affects the quality of life. It is estimated that as many as eight out of ten patients affected by rheumatoid arthritis, even if treated with biological drugs, still develop pain ”.
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