25 thousand. There are many people in Italy with a diagnosis of systemic lupus erythematosus (SLE). And in about half of them the disease also involves the kidneys. We are talking about a condition called lupus nephritis: in a quarter of cases it is even present from the onset of lupus and, if not treated promptly, puts patients’ lives at serious risk.
The survey: only 25% of patients recognize the alarm bell
One of the signs of lupus nephritis is easily recognizable: the presence of blood in the urine. Yet, only 25% of patients are aware of this, and therefore do not know that a simple urine test would be enough to understand, right from the start, if there is already kidney damage and thus avoid possible dialysis or a transplant. The data emerges from the Survey “Lupus: what do you know about it?” conducted by Nume Plus on a sample of over 1,200 people (80% of whom were members of patient associations) as part of the project Panel – “Advanced care pathways for the treatment of patients with lupus nephritis”.
Lupus nephritis, a new drug arrives to reduce kidney damage by Dario Rubino 20 September 2023
The results of the survey – which was carried out with the patronage of the Italian Society of Rheumatology (SIR), the Italian Society of Nephrology (SIN), the Italian Society of Hospital Pharmacy and Pharmaceutical Services of Healthcare Companies (SIFO) and the Group LES Italian OdV (Association for the rights of patients with SLE), and with the non-conditioning contribution of Otsuka Pharmaceutical Italy Srl and GlaxoSmithKline – were presented today in Rome. Well: 67% declare that they have never reported to their general practitioner that they have urinary anomalies such as the presence of traces of blood. Not only that: among the remaining 33% who did so, only 38% were sent for a specialist visit.
Lupus and lupus nephritis
“Lupus nephritis is a frequent and severe manifestation of systemic lupus erythematosus, a chronic systemic autoimmune disease that mostly affects young women of childbearing age,” she states Gian Domenico Sebastianinational president of SIR, director of the Rheumatology Unit of the San Camillo – Forlanini Hospital and scientific director of the project together with Stefano Bianchi, president of SIN. The symptoms that appear in the initial stages of lupus are unfortunately non-specific, such as joint pain, fever, tiredness and general malaise, and which vary from person to person. For this reason, many years can pass before the patient receives a correct diagnosis and begins appropriate treatment. “An early diagnosis, the timely start of treatment aimed at remission and strict adherence to therapies are essential to reduce the risk of relapses, the progression of organ damage and improve the prognosis and quality of life – continues Sebastiani – Within the project Panel the need has emerged to increase the number of specialists dedicated to SLE and to provide networks according to the hub&spoke model to improve access to care and the quality of care”.
Systemic lupus erythematosus, what it is and what medications are indicated by Irma D’Aria 20 March 2023
Although progression and survival have greatly improved over the years, lupus nephritis is still associated with a mortality risk 6 times greater than the population, and patients who develop end-stage renal failure have a mortality risk 26 times greater than the population. . “This condition represents a form of renal pathology whose pathogenetic mechanisms are not yet fully understood – he explains Sandro Feriozzi, director of the UOC of Nephrology and corporate dialysis ASL of Viterbo and member of the SIN – The alterations of the immune system, deriving from lupus, cause inflammatory renal lesions. Patients suffering from this disease are at high risk of relapses, which can cause additional damage to the kidneys and, consequently, lead to a dangerous evolution towards end-stage chronic kidney disease. When this happens, it is then necessary to resort to more invasive treatments, such as dialysis or even a kidney transplant. All this determines a greater use of resources by the National Health System as well as a worse prognosis for the patient”.
Chronic kidney disease: early diagnosis thanks to the nephrology chart by Dario Rubino 09 March 2023
And false myths
The survey generally shows a good knowledge of the disease, but also disorientation regarding the treatment path and the persistence of false myths. For example, to the question “who treats lupus?”, 87% of participants respond that it is mainly treated by a rheumatologist, while the nephrologist was selected in only 36% of cases. Again: 31% think that among the consequences of the evolution of lupus is that of not being able to have children and 13% fear being able to transmit their disease. “It is necessary to increase awareness of the pathology not only in the general population but also in general practitioners and paediatricians, who often represent the first figures with whom the patient interacts – he comments Rosa Pelisseropresident of the LES Italiano OdV Group.
Chronic kidney disease: from the risk for premature births to nephrotoxic drugs by Dario Rubino 03 April 2023
A multidisciplinary and personalized approach
Like all complex diseases, lupus and lupus nephritis also require a multidisciplinary and personalized approach, both in the diagnosis and follow-up phases, involving multiple professionals: general practitioners, paediatricians, rheumatologists, cardiologists, nephrologists, infectious disease specialists, psychologists, nurses and hematologists, as underlined by the SIR president. With this objective in mind, the Panel project was born, in which 22 experts including clinicians (doctors, scientific societies, sector specialists), patients (patient associations, caregivers, nurses, journalists) and institutions (hospital pharmacists, directors of local health authorities) participated. and hospital facilities). “We have created a multidimensional Consensus, with the ambitious objective, for the first time, of putting the different actors who intercept the patient affected by lupus nephritis in the various stages of his journey on the same level of reasoning: clinicians, patient associations , caregivers, nurses, sector journalists, hospital pharmacists, directors of local health authorities and hospital facilities – he explains Stefano Remiddi of Nume Plus – In this way, the entire panel of experts explored the different dimensions, discussing and agreeing both the current limitations of the care models and the improvement proposals for the construction of an even more effective future care model”.
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Focus on information
From the work carried out by the ‘task force’ also emerges the need to promote information campaigns to increase knowledge of both risk factors and new therapeutic possibilities: “Scientific Societies and Patient Associations must involve institutions and other healthcare professionals in information campaigns – concludes Pelissero – Correct information from the doctor on motherhood with Lupus and psychological and psycho-educational interventions are also fundamental for the correct management of the pathology, possibly also with self-help groups for caregivers too”.