Made by the PaLiNUro Association (Patients free from urothelial neoplasms), designed by patients for other patients. The different Centers are evaluated for competence, effectiveness and humanity, as well as distance
An internet site created by patients to help other patients find the best hospital close to home, making use of the experience of those who have known and personally experienced the facilities in the area and are able to provide accessible, reliable and verified information. Three are the parameters of judgment used: competence, effectiveness and humanity. Thus was born the URO-H-ADVISOR portal, promoted byPaLiNUro Association (Patients free from urothelial neoplasms), dedicated to beyond 25 thousand Italians who every year receive a diagnosis of bladder cancer. When a tumor is discovered, inevitably, there is a shock: anxiety, fear, disorientation – he says Edoardo Fiorini, president of PaLiNUro -. It is difficult to be lucid, it is not always easy to rely on the most competent structure, also considering the distance from home, which makes a big difference for the patient and those who care for him. So we thought we would answer the question that everyone asks themselves as soon as they receive the diagnosis: where do i go to get treated?.
Beware of these symptoms
Urothelial carcinoma, more commonly called bladder cancer, a malignant neoplasm that originates in the urothelium, the mucosa that lines the bladder internally and the upper urinary tract which carries urine from the kidney into the bladder, which is the organ most affected by this tumor. 5-year survival from diagnosis of about 80% in men and 78% in womenThis is due to the fact that two thirds of the forms are non-infiltrating, that is, they have not invaded the muscular wall and therefore have a more favorable course and a higher chance of healing. Today, several new treatments are also available in Italy that aim to keep the neoplasm under control when it reaches an advanced and metastatic stage. Although it is not often talked about and it is not among the best known, the one on the bladder the fifth most common type of cancer in our countrythe fourth in the male population, which is most affected: in 80% of cases, in fact, the neoplasm affects men – he specifies Patrizia Giannatempo, in force at the Medical Oncology of the National Cancer Institute of Milan -. The characteristic symptom is the presence of blood in the urine (hematuria), but they should not be neglected either frequent urge and urge to urinate, burning, pelvic pain and back pain. And recurrent cystitisoften underestimated by patients and doctors themselves.
Reviews filtered by the association
The Uro-H- Advisor portal was created thanks to the contribution obtained with the victory in 2020, and then again in 2021, of the Roche Foundation call for patients, which finances only 10 projects each year aimed at improving people’s quality of life. . The database currently collects over 160 qualified reviewsbut has the goal, in the next 2 years, to be known and made accessible to at least 20 patient associations so that they can use it for the same purpose, adapting it to their specificities in a perspective of cooperation and exchange of shared actions that give voice to the needs of the sick. In the app, through a series of questions, they are evaluated, with a score from 1 to 5the three most important parameters for us for a hospital: competence, effectiveness and humanity – says Fiorini -. A general opinion is quoted from a weighted average of these three judgments. Finally, again with a rating of 1 to 5, the compiler is asked whether he would suggest the facility to a new patient or not. All evaluations are compared with the national average of all hospitals that have had a review. finally, it is possible to issue a free judgment which, however, must be submitted to PaliNUro before being published, in order to avoid offensive reviews.
A replicable model (free)
All the data used for the database relating to the hospitalization facilities were found by the Ministry of Health. For each hospital, the number of specific surgeries to treat bladder cancer is indicated (in such a way as to give an idea of the experience of the single center) carried out on the basis of what is indicated by the National Outcomes Program (latest edition available). For each facility, where available, they are highlighted the reference specialists and characteristics such as the availability of certain therapies, the types of surgeries performed and the techniques used have been indicated, the availability of some tests, particular diagnostic techniques and rehabilitation services. It is clear that the higher the number of judgments, the more weighted the evaluation becomes – concludes Fiorini -. The fundamental aspects that discriminate the selection are the competence, effectiveness and level of humanity of the hospital and its doctors, obviously in addition to the logistical aspects, especially the distance from home of the person concerned. And our entire database was built as replicable and free sourcethat is to say it can be used by other patient organizations for other types of cancercompletely free of charge.
June 13, 2022 (change June 13, 2022 | 15:09)
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