A urine test could highlight kidney damage early and thus avoid the risk of dialysis or a transplant. Yet, only 25% of people know that the presence of blood in the urine is a warning sign for lupus nephritis, a manifestation of the systemic lupus erythematosus (SLE) which affects the kidneys with potentially fatal consequences if not treated promptly. Not only that: 67% declare that they have never reported urinary anomalies such as sediment alterations (such as traces of blood) to the doctor and, among the 33% who have done so, only 38% have been sent for a specialist visit. These are some of the data from the 'Lupus: what do you know?' survey, conducted on over 1,200 people – of which 80% were members of patient associations – by Nume Plus as part of the Panel project (Advanced care pathways for the treatment of patients with lupus nephritis)made with involvement of 22 experts and 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 (Sigo) and the Les Italian Odv Group (Association for rights of patients with SLE), with the non-conditioning contribution of Otsuka Pharmaceutical Italy and GlaxoSmithKline.
“Lupus nephritis is a frequent and severe manifestation of SLE, a chronic systemic autoimmune disease that mostly affects young women of childbearing age. In Italy approximately 25 thousand people are affected by systemic lupus erythematosus and, in one case out of 4, at onset of the disease, patients are also affected by lupus nephritis (renal involvement). This percentage rises to 50% if we consider the course of the disease”, he explains Gian Domenico Sebastiani, national president of SIR and director of Uoc Rheumatology San Camillo – Forlanini Rome hospital and scientific director of the Panel project, together with Stefano Bianchi, president of Sin.
“This condition – he adds Sandro Feriozzi, director of the Uoc of Nephrology and corporate dialysis ASL of Viterbo and member of the Sin – represents a form of renal pathology whose pathogenetic mechanisms are not yet fully understood. The alterations of the immune system resulting from lupus cause inflammatory renal lesions which can lead to a dangerous evolution towards chronic kidney disease”. Due to the non-specific symptoms of the initial stages of the disease (joint pain, fever, tiredness and general malaise), which vary from person to person – we read in a note – many years can pass before the patient receives a correct diagnosis of SLE and begins appropriate treatment.
“An early diagnosis, the timely start of treatment aimed at remission and strict adherence to therapies – underlines Sebastiani – are essential to reduce the risk of relapses, the progression of organ damage and improve the prognosis and quality of life “. As, “within the Panel project, the need emerged to increase the number of specialists dedicated to SLE and provide networks according to the Hub & Spoke model to improve access to care and the quality of care“. In fact, if lupus nephritis is not treated adequately, continues Ferriozzi, “it can lead to end-stage renal disease. When this happens, it is then necessary to resort to more invasive treatments such as dialysis or even a kidney transplant. All this leads to a greater use of resources by the national healthcare system, as well as a worse prognosis for the patient”. Even if progression and survival have greatly improved over the years, lupus nephritis is still associated with a risk of mortality 6 times greater than the population – experts warn – and, in the presence of terminal renal failure, the risk becomes 26 times higher.
The survey revealed, on the one hand, a good knowledge of the disease, on the other a certain disorientation on the treatment path and the resistance of some false myths. If 87% of those interviewed recognize the rheumatologist as the doctor who treats SLE, the nephrologist is selected by only 36%. Actually “lupus nephritis would require a coordinated and personalized multidisciplinary approach – clarifies President SIR – both in the diagnosis phase and in the follow-up phase, which involves more professionals: general practitioners, paediatricians, rheumatologists, cardiologists, nephrologists, infectious disease specialists, psychologists, nurses and haematologists”.
The Panel project was born with the aim of photographing thecurrent treatment model for lupus nephritis, identify its critical issues and possibilities for improvementand arrive at the definition of new models of care that make the best use of upcoming innovative therapies and meet the needs of clinicians, patients and resource managers in healthcare facilities. 22 experts participated in the project, including clinicians (doctors, scientific societies, sector specialists), patients (patient associations, caregivers, nurses, journalists) and institutions (hospital pharmacists, directors of local health authorities and hospital facilities).
“As part of the Panel project – he states Stefano Remiddi of Nume Plus – we have created a 'multidimensional Consensus', with the ambitious objective of putting on the same level of reasoning: clinicians, patient associations, caregivers, nurses, sector journalists, hospital pharmacists, directors of local health authorities and hospital facilities. 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 a more effective future model”.
The following also emerges from the work carried out by the Panel project task force need to implement information on the disease, to pursue the goal of a timely diagnosis and dispel some false beliefs. In fact, three out of 10 respondents (31%) believe that the evolution of lupus compromises the possibility of having 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 Pelissero, president of the Les Italian Odv Group – Scientific societies and patient associations must involve institutions and other healthcare professionals in information campaigns” on topics such as “motherhood with lupus”. We then need “psychological and psycho-educational interventions for the correct management of the pathology, possibly also with mutual self-help groups, also useful for caregivers”.
#recognize #lupus #nephritis #symptoms #Panel #project