Novartis, the Spanish Association of Patients with Chronic Myeloid Leukemia (AELEMIC) and the Spanish Group of Chronic Myeloid Leukemia (GELMC) have announced the documentary "eLMoCiones", an audiovisual piece that aims to delve into the relevance of quality of life and the still unmet needs of people with this condition.
The work has been presented at the XI National Congress of AELEMIC, coinciding with the commemoration of World Chronic Myeloid Leukemia Day, and shows both the day-to-day life of patients and the perspective that healthcare professionals have on this reality.
Chronic myeloid leukemia (CML) accounts for between 15 and 20 percent of all leukemias, and in Spain, around 500 new diagnoses are detected annually. It is a cancer of the blood and bone marrow, generally slow to evolve, triggered when blood precursor cells produce an excess of white blood cells.
Current treatments have allowed CML to be considered today a controllable chronic disease, with survival rates and life expectancy similar to those of the population without the condition. However, the need to maintain prolonged therapies affects the physical, emotional, and social well-being of many patients, with a direct impact on their quality of life.
"In the face of treatments, each patient reacts in an individualized and different way. We accept the treatment better or worse, and in the end, despite our blood count saying that everything is improving and going in the right direction, many more complications and changes occur in our body that affect us differently in day-to-day life. If we cannot share this, alleviate it, and find ways to address it, we will not have quality of life. We need conversations and decisions between patients and hematologists to incorporate more deeply those aspects that most influence our quality of life," stated the president of AELEMIC, Mari Carmen Cano.
In order to capture this situation, "eLMoCiones" integrates a project from the Neuroscience Laboratory of the Complutense University of Madrid, aimed at measuring the physical, social, and emotional impact of CML. To this end, the neurophysiological, cognitive, and emotional responses of three people with CML and three hematologists are studied while they view a first-person testimony, in which a patient expresses the feelings and emotions that accompany her in living with the disease.
The analysis of this audiovisual experience allowed to confirm how patients saw themselves reflected in the narrative and recognized common experiences. In the case of the specialists, the account generated emotions linked to empathy, clinical concern, and the responsibility of accompanying the patient, evidencing that both parties approach the same reality from different but complementary perspectives.
Thanks to this methodology, the project focuses on the need to strengthen communication between doctor and patient regarding quality of life and to promote a more active participation of people with CML in decisions about disease management. Maintaining a fluid dialogue with the healthcare team, promoting active listening, and moving towards shared decisions can represent a significant change in the experience of each patient.
"Chronic myeloid leukemia is a disease whose approach has evolved enormously in recent decades, but it remains essential to maintain a patient-centered vision. Today, we not only seek to control the disease but also to reduce its impact on day-to-day life, pay attention to quality of life, and adapt therapeutic decisions to the needs and circumstances of each person. Continuous follow-up and dialogue between the patient and the healthcare team are essential to advance towards the best possible management," emphasized Valentín García, president of the Spanish Group of Chronic Myeloid Leukemia and attending physician of Hematology at Ramón y Cajal University Hospital.
Listening to the patient, a key piece in the approach to CML
The needs detected through "eLMoCiones" are also reflected in the results of "CML SUN" (Chronic Myeloid Leukemia Survey on Unmet Needs), an international survey promoted by Novartis and the CML Advocates Network, in which more than 500 patients and 200 doctors from 11 countries, including Spain, have participated.
Among the main results, the study indicates that between 69 and 78 percent of patients suffer from physical and emotional fatigue related to treatment, and that 54 percent perceive that this conditions their social and work life.
Likewise, 58 percent express a constant concern about the effectiveness of the therapy. The data also highlights that it is necessary to continue advancing towards more shared decision-making models, as between 44 and 48 percent of doctors believe that patient involvement in therapeutic decisions remains low.
To support people with CML in managing their condition, AELEMIC and Novartis have developed "My CML," a digital tool that allows for the recording and monitoring of symptoms. This platform enables the patient to note different aspects of their experience with the disease and have useful information for the consultation with their hematologist or another healthcare professional.
"For more than 25 years, at Novartis we have worked alongside the community of patients and healthcare professionals to transform the lives of people with chronic myeloid leukemia. This evolution has taught us the importance of understanding how patients experience the disease beyond clinical aspects and the unmet needs that still exist. Initiatives like "eLMoCiones" help us take a further step, understanding how the same testimony can be lived and interpreted differently by patients and hematologists. Making these perspectives visible is essential to bring them closer, promote a more open conversation in consultations, and move towards increasingly personalized and human care," concluded the Director of Communication and Patients at Novartis Spain, Esther Espinosa.