2023-12-05 19:16:22
Good psychological support? Achievable. A homogeneous and shared treatment path? Doable. ‘Digital’ spaces to connect doctors and patients? Doable. Centers to avoid trips to Day Hospitals? More complicated but doable. A checklist of key questions to ask the doctor and dissemination of information material? Very doable. These are some of the 11 main needs expressed by patients with multiple myeloma and their achievability index. They were identified by the eM2power project, presented today in Milan and born in collaboration with three of the main patient associations: Italian Association against Leukemia, Lymphoma and Myeloma Onlus (Ail), La Lampada di Aladino Ets and Fondazione Renata Quattropani Onlus, supported by a multidisciplinary scientific board directed by Alessandro Corso, hematologist and director of the Hematology Unit at Legnano Hospital (Asst Ovest Milanese).
The unique value of this project, created by GSK – reports a note – was precisely its ability to go beyond the simple collection of patients’ needs and transform itself into a real ‘manifesto’ of solutions, to be implemented in time short, which will allow patients to improve their relationship with their doctor, assert their rights more, find information and support, and obtain better services throughout the country. The result was video tutorials and informative and fillable sheets, a prioritized list of questions to ask the haematologist and the other specialists on the treatment team, a diary to keep track of symptoms and an agenda with information. All the info on ilmielomamultiploetu.it/convivere-con-il-mieloma-multiplo/em2power.
“Multiple myeloma is the second blood cancer in Italy, it affects around 2,700 women and 3,000 men every year, and is caused by excessive reproduction of plasma cells in the bone marrow – says Corso – In recent years there has been much progress in diagnosis and in therapy and life expectancy has grown significantly, today managing to guarantee long periods of disease control which means for the patient periods free from the typical symptoms of myeloma. However, living with it remains an obstacle course. The eM2power project was created precisely to help patients in a concrete way, listening to their unexpressed needs to provide solutions that can improve the management of the disease. It is no coincidence that the board is multidisciplinary, with the nurse and case manager, Alessandra Meringolo, and the psychologist and psychotherapist, Chantal Arianna Borinato , always members of our Hematology Unit”.
In first place among the needs is the request for psychological support. “Patients should not be left alone – explains Felice Bombaci, national coordinator of Ail Patient Groups – Psychological support throughout the treatment process is therefore fundamental and could involve providing support desks in the hematology services or even the possibility of accessing remote online sessions. This need also emerges from the need to share one’s experiences with other patients.”
The second need, the need to be able to follow simple and integrated treatment paths. “Patients ask to improve the relationship with doctors and feel understood, listened to, not left alone – observes Patrizia Vitali, director of the Quattropani Onlus Foundation – They ask to be at the center of the treatment path and greater integration in the team and that the their rights”. The third need is to have clear and complete information “as well as a reduction in costs for transport and for some specialist visits which in many cases they are forced to pay out of their own pocket to avoid the long waiting times of the NHS – adds Davide Petruzzelli, president of La Aladdin’s lamp – It is also necessary to free haematologists from excessive bureaucratic and administrative burdens, to arrive at increasingly rapid diagnoses and to avoid the patient spending many hours in hospital for therapies”.
For each of these 11 needs, various solutions were hypothesized, to which a score was assigned to indicate urgency and feasibility, then ‘weighed’ in a feasibility index (Ir, from zero to one). The analysis shows that there are at least ten possible solutions that show a high Ir, i.e. greater than 0.5. “Hypothesizing psychological support services, for example, is considered an urgent priority and has a high IR, equal to 0.55 – specifies Felice Bombaci – Digital can also offer many opportunities and has a good IR, equal to 0.53”. The need to find dedicated clinics near home and obtain adequate home care (Ir 0.44 for the former, 0.47 for the latter) is complex but not impossible. “Much simpler but no less important is the dissemination of information material, as demonstrated by the IR of 0.75 – underlines Vitali – It is no coincidence that it has already materialized with the eM2power project, through video tutorials and information sheets that can be filled in to improve the relationship doctor-patient, made available to people with multiple myeloma through the website ilmielomamultiploetu.it and the related Facebook page. The check list of questions for the doctor has also been created”.
Other “solutions are more complex because they involve institutional interlocutors (Regions and Municipalities) – remarks Petruzzelli – It will therefore be important to map the urgent needs still unanswered Region by Region and therefore redefine the PDTA for multiple myeloma. One of the main objectives of the near future, in fact, will be to free the opportunities for treatment and access to therapies from one’s own Region, to finally reduce territorial disparities and at the same time begin the long-awaited local care, as envisaged by Ministerial Decree 77 and from the Pnrr”.
“Gsk – concludes Laura Cappellari, Patient Affairs Director – considers the sharing, discussion and involvement of relevant patient associations to be a fundamental part of its development vision to grasp and integrate the perspective of the person with multiple myeloma into its activities. The objective of the eM2power Project was to identify needs and needs that are still unresolved, identify possible solutions and co-create with the associations materials and tools useful to those who, day after day, courageously challenge the disease”.
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