The approach path to donor hematopoietic stem cell transplantation it is like a journey, which begins with the leap into the void of a severe and potentially incurable disease. A journey that does not take place alone because the patient is accompanied by the hand by doctors, nurses, other professionals and family members. The transplant process is often complex and full of uncertainties, complications and fatigue, so much so that before seeing the result, for many the dawn of the return to life, it is necessary wait at least 100 days. And it is for these ‘travelers of life’ that Msd Italia and Gitmo (Italian group for bone marrow transplant) have created a guide to accompany them in this experience.
The website www.100giorniallalba.it, promoted by Msd Italia with the scientific supervision of Gitmo, was created precisely for inform, support and accompany patients undergoing allogeneic haematopoietic stem cell transplantation from the pre-transplant preparatory stages up to 100 days, and beyond. A project that will continue to expand in the coming months with in-depth analysis of the individual themes, guides to the Centers and a space for reporting content provided by patients.
“The path of a patient who undergoes a bone marrow transplant is very complex – he explains Fabio Ciceri, president of Gitmo – and its follow-up is not limited to a few days or weeks but lasts a lifetime. It is true that the first 100 days are those in which the risk of complications is highest, but a transplant patient will never forget that it is. And for thiso the knowledge, and full awareness, of the meaning of every single step of this path is essential for a successful outcome of the procedures and also to minimize the impact they have on the patient and family. All this generates a ‘need for information’ which each transplant center provides with dedicated time, material and staff “.
“What we did with the website www.100giorniallalba.it – continues Ciceri – was to take all these information tools and make a synthesis of them in order to create a common document and, therefore, a shared tool, at the service of the patient but also of health workers.The added value is precisely that of having achieved a platform that will gradually become a point of referenceor, a source of informative material but also of exchanges of information and experiences “.
The website www.100giorniallalba.it, in fact, will be developed in successive phases in the coming months. It is now online with the ‘Patient Journey‘, that is the path of the patient from the pre-transplant phases up to those over 100 days. Clear but scientifically validated information sheets. Material created thanks to the teamwork of doctors and nurses from over 50 centers belonging to the Gitmo network where allogeneic transplants are performed. The texts of the site have been entirely written by the Gitmo Nursing Group, with the collaboration of transplant doctors and other professionals.
“We felt the urge to publish this first part of the material to make it available as soon as possible to patients, caregivers, doctors and nurses – he says. Stefano Botti, head of Gitmo nursing activities – It was a team effort and for this I would like to thank Chiara Cannici and Valentina De Cecco and Nicola Mordini who have completely dedicated themselves to this truly impressive work. Because it was not easy to coordinate the work of over 40 collaborators, who brought together an enormous amount of material and scientifically proven information, making sure that the final product spoke the patients’ language, but it was worth it! “.
“However, the challenge is not over – warns Botti – in the coming months the site will also be expanded with an in-depth section, with a description of the Centers and finally with a section where information, experiences and advice from patients themselves will be sharedthe. Sharing is the thin red thread that binds this whole project: sharing of information and experiences, sharing between doctors / nurses and patient / caregiver, sharing between centers on the network. A project that lives, expands, grows and changes its face over time “.
The initiative was commissioned by Msd Italia as part of a long-term plan for information on the prevention and contrast of infections. “The allogeneic stem cell transplant, like any transplant, really begins with the leap into the void of a severe diagnosis – he explains. Nicoletta Luppi, president and CEO of Msd Italia – Transplantation often constitutes the apical therapy, which should bring patients back to life. However, patients and family members, but also healthcare professionals, know that there are 100 days ahead of them where the risk of complications is very high: we only think about the possibility of contracting cytomegalovirus infection. Our commitment alongside the doctors and patients who face this battle is realized first and foremost in our laboratories, from which drugs such as letermovir have come out, which is able to protect patients from the reactivation of Cytomegalovirus “.
“But since we believe that patient empowerment is fundamental in the care path, we wanted to go further and, thanks to Gitmo, this tool has been created which offers a synthesis of all the information that each Center provides to its patients. a first phase, in the coming months the site will expand and gradually it will be enriched with different sections and common experiences. Sharing is the watchword of this projector, so that no one is left alone. Because those who ‘travel’ accompanied certainly go much further “, concludes Luppi.