Idiopathic Pulmonary Fibrosis, Two Projects to Advance Diagnosis
Idiopathic Pulmonary Fibrosis, More Can Be Done: Two Projects in Rome to facilitated and early diagnosis, Ensuring Rapid Access to Treatment and Improving Doctor-Patient Communication. Idiopathic Pulmonary Fibrosis (IPF) is a rare, Poorly Known and Recognized Disease, Treated Late in One Out of Two Cases. There are 16 houses for 100 in Italy.000 Inhabitants.
Early Diagnosis and Timely Treatment Are Key to a Better Prognosis.
Incursing Awareness, Sharing Information About The Disease Amag Physicians, and overcoming Difficulties in Reaching An Early Diagnosis: These are the Goals of "Perfect" and "IPF Counseling",
Innovative Projects, Promoted by Roche and Adopted by the San Camillo-Forlanini Hospital in Rome, to support specialist Physicians Involution in the Management of the Disease and in Taking Charge of the Patient.
Idiopathic Pulmonary fibrosis, doing more
"Doing More" for patients with idiopathic Pulmonary Fibrosis (IPF), A Serious and Rare Disease That Causes Progressive and Irreversible Scarring of the Lungs, with survival Limited to Three Years After diagnosis in 50 percent of cases. A Need Met by Roche, Which is promoting "Perfect" and "IPF Counseling," Two Projects aimed at Increased Specialists' Awareness and Clinical Experience of IPF, to view The Many Difficulties That Stand in The Way of Early Diagnosis and Timely Treatment, Often Accompanied by a significant emotional burden of physicians and patients.
San Camillo-Forlanini Hospital in Rome is one of the Italian centers to have adopted both projects.
"The "PerFECT" project is very interesting because it allows through an IT platform to connect less experienced centers and reference centers for rare diseases such as pulmonary interstitial diseases, which are nevertheless of particular interest because of the new treatments that have been developed in recent years , so being able to make early diagnoses and be able to offer patients the new therapies is something of immense value – states Alfredo Sebastiani, Medical Director Pulmonologist, U.OR.St. Pulmonary interstitial disease, A.OR. San Camillo-Forlanini – through the platform, radiological and imaging data and laboratory data can be sent to the referral center, allowing comparison and sharing among the health professionals who take care of these patients".
Difficulties Related to Diagnosis
One of the Major Difficulties Related to this Disease is precise the timing of diagnosis, which is complex and elaborate, and involves a real team of specialists: pulmonologists, radiologists and anatomopathologists. In fact, it is estimated that one out of every two patients is not correctly diagnosed with the dysase and that up to Two Years May elapse from the first sympoms before with definitive ascertainment under the diagnostic profile. Valuable time for patients who thus lose the opportunity to access timel therapy, which is necessary to improve prognosis and slow the progression of ipf.
Espencially in Small Hospital Centers, it is not easy to have the necessary information and experience to arrive at timely diagnosis. Here then, The Support of A Referral Center With More Experience for A Second Opinion Becomes A Determining Element for A Certain Diagnosis.
Going in this direction is the "PerFECT" project, which consists of a network of peripheral centers, called "Spoke," connected through a web platform to expert reference centers, the so-called "Hubs". The Goal of the "Perfect" Project is precise to Facilitati and Support the diagnosis of IPF, putting less experience centers in direct contact, in a Simple Way and in Real Time, with the centers of reference in the field of interstitial length Disease, in Order to Obtain a Second Opinion, Which Arrival Quickly and "At Kilometer Zero". Through to computer tools, in fact, The hub centers evaluate the clinical documentation sent by the spoke centers and try a second opinion.
An Optimization of Information About The Disease and An Aid to the Sustainability of the System: Thanks to Telematic Sharing, in fact, patients and their families can avoid or veteran long and costly triphween regions, While event Diagnosis and in a short time, Avouting Instrumental Investigations and inappropriate Examinations.
To date, nine centers have joined the "PerFECT" project and nearly 300 second opinion requests have been handled.
A further critical issue in the management of the disease is the emotional impact that the
Diagnosis has on the patient. A difficulty picked up by Roche, which is promoting "IPF Counseling," a
training program dedicated to physicians and focused on communication to improve interaction
Communicating with the patient with IPF. Communicating the diagnosis, taking charge of the patient,
maximizing adherence to the proposed treatment and optimizing the therapeutic alliance: these are
these are the themes on which the project was developed, which started from the very voice of the patients, who are given
the opportunity to interact with trained and qualified physicians, including from a communication standpoint,
to get the necessary clinical and psychological support.
"As for "IPF Counseling," the scenario is different because these are patients who already have a
diagnosis of idiopathic pulmonary fibrosis which also has new treatments but must be well managed. Counseling
consists of an assessment by competent psychologists of the way in which the health care provider poses and
manages the diagnostic-therapeutic pathway to patients. Psychologist attend outpatient visits without
intervene, assess its criticality, and take charge of the whole pathway, facilitating the physician's task,
so it identifies better patterns of management and talking with the patient. All this appears to us as very
innovative", explains Alfredo Sebastiani.
Initiative involving ten centers
The initiative involves 10 selected referral centers on the Italian territory, started in April 2017 yes
articulates in a series of educational meetings attended by physicians involved in taking care of
of IPF cases and experienced psychologists working with communication strategies focused on a
patient centered approach.
"When faced with an inauspicious disease like IPF, which takes away time and hope, it becomes crucial to
acting so that all players have the information, knowledge and experience to be able to identify
the pathology as early as possible and be able to best deal with the time of diagnosis – comments
Anna Maria Porrini, Medical affairs & Clinical Operations Director of Roche Italy – Roche's commitment goes
also in this direction: providing the tools and technologies necessary for patients to see that their
their right to prompt diagnosis and timely treatment, and for clinicians to compare and
having information and updates".