Impact-AML: A European Project for Optimizing Treatment and Assessing Quality of Life in Relapsed/Refractory Acute Myeloid Leukemia Patients
Authors: Maturo Antonio , Castellaccio Elisa , Moretti Veronica , Nier Samantha , Martinelli Giovanni , Marconi Giovanni , Musuraca Gerardo , Adelsbach Simone , Minguzzi Martina Vittoria , Esteller Maria Belles 
Published: December 2024

IMPACT-AML is a European project under the HORIZON-MISS-2022-CANCER-01 program, managed by the Istituto Romagnolo per lo Studio dei Tumori “Dino Amadori” (IRST). IRST coordinates 16 partner institutions across Europe. The project targets relapsed or refractory acute myeloid leukemia (R/R AML) and aims to provide new evidence for potential therapies. IMPACT-AML will create an inclusive master framework (STREAM) to include patients across Europe for clinical trials and outcome monitoring. A prospective randomized pragmatic clinical trial (RPCT) will compare traditional “high intensity” rescue chemotherapy with biology-driven “low intensity” rescue treatments. The goal is to collect real world data on survival benefits, patient and caregiver preferences to provide robust data on optimized treatments for R/R AML. The project supports scientific research on the STREAM platform and clinical trial by evaluating patients' quality of life, leveraging the synergy between the University of Bologna's sociologists and ALAN (Acute Leukemia Advocates Network). The objective is to assess the sustainability of experimental therapy, its social and economic impact on patients' health. By the end of the 5-year project, the goal is to draft guidelines for involving AML patients and their caregivers. Regarding methodology, while the vast majority of PROs in cancer have been acquired with questionnaires (discrete-choice questions), we use a narrative-based approach to capture directly from patients and caregivers the most important needs, listen to the patient's story, and the meaning they attach to their condition. This includes interviews with 19 AML patients from Italy (5), Germany (10), and Spain (4). UNIBO conducted two living labs: one using the World Café method with family caregivers (4) and another with medical experts (13) using the Nominal Group Technique (a structured methodology for group brainstorming that minimizes interpersonal influence). The data from this preliminary research have yielded the following results: Leukemia patients receive essential social support from family caregivers and friends, who provide emotional and practical assistance. Joining support groups and associations helps patients share experiences and coping strategies. Communication is vital: with doctors for reassurance and symptom management, and with family to openly discuss their condition and break cancer taboos. Economically, patients do not face direct treatment costs due to healthcare system exemptions but do incur indirect costs. Psychological well-being is often affected, necessitating support for disease acceptance and fear management. Faith and spiritual practices offer comfort. Daily life changes significantly, requiring activity reorganization to maintain autonomy and symptom compatibility. Caregivers manage their loved ones' physical and emotional symptoms, facing significant logistical and cost challenges. They also need to accept the illness and reorganize their lives around the patient's needs. Partnerships with hospital structures provide crucial emotional and medical support. Patients and caregivers develop lay expertise. Doctors identify key patient needs as effective communication, maintaining social ties, symptom reduction, and emotion management. At home, the need for reassurance increases, making the caregiver's role even more critical. A strong doctor-patient relationship is fundamental for therapy effectiveness. Overall, the quality of life for AML patients depends on: Social and psychological support from family, friends, and support groups.Economic impact and daily management, requiring significant lifestyle reorganization.Quality of care and the doctor-patient relationship, crucial for therapy success and emotional support.