Care and Quality of Life of Chronic Patients. Preliminary Findings from a Qualitative Research on Acute Myeloid Leukemia Patients

Castellaccio, Elisa

The Horizon IMPACT-AML project (a randomized pragmatic clinical trial for relapse or refractory acute myeloid leukemia), in which we are involved as health sociologists, aims to create a platform for rare chronic blood diseases to conduct clinical studies on alternative therapies. Our goal is to investigate, starting from a broader reflection on chronic illness, the quality of life of patients with acute myeloid leukemia and their family caregivers in order to emphasize the main care and assistance needs for AML patients, highlighting areas for potential improvement in treatments. We also investigate how the doctor-patient relationship is shaped when dealing with a chronic condition that requires continuous monitoring and care.

This research presents preliminary results from a qualitative study conducted with patients, caregivers, and healthcare professionals. Specifically, the research involved 30 AML patients who were interviewed through in-depth narrative-based medicine interviews. The patients are divided across three partner countries: Italy, Germany, and Spain.

In parallel, two Living Labs were conducted: one with healthcare professionals (using the Nominal Group Technique) and the other with caregivers (using the World Café Method).

The aim is to confirm, deepen, and expand what emerged in the literature, which already presents data on this matter: leukemia has an obvious negative impact on patients, carers, and their wider families. It is important that the healthcare system approaches this disease considering all the effects that a chronic condition has on the social and individual level, moving towards a holistic approach that encompasses the ethics of care in all its facets.

Chronic cancer patients require comprehensive care: from healthcare to social-relational, spiritual, and eco-systemic aspects. Care and society must be able to respond to and embrace the chronicity that is increasingly present.