Blood cancers: from patients’ emotions a guide to improve relationships with doctors and family members
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Emotions under the lens to understand what patients living with chronic blood cancer feel when they go to the doctor or relate to family or friends. A check-up of daily sensations made for the first time with a neurometric analysis that evaluated parameters such as brain activation, heart rate, eye movement and skin sweating of 40,000 patients with Chronic Myeloproliferative Neoplasms and Chronic Myeloid Leukemia. It was precisely from the results of the study – conducted by the Behavior and Brain Lab research center of the IULM University of Milan – that ‘Connessioni di Vita was born. The guide for interactions that are good for you’, promoted by Novartis, in collaboration with AIPAMM, as part of the MIELO-Spieghi information and awareness campaign. A handbook of social utility to build positive and quality relationships.
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‘Measuring’ emotions
What does someone who lives with chronic blood cancer look at, what does he remember and what does he feel? The researchers started from these questions to conduct their analysis through an online questionnaire to collect the opinions of over 130 patients on the relationship with the hematologist and caregivers. “It is the first application of neurometric techniques in the field of chronic blood cancer. We were able to observe – he explains Vincenzo Russo, professor of Consumer Psychology and Neuromarketing, IULM University, coordinator of the Behavior and Brain Lab Research Center of IULM University – the activation of different areas of the brain during common interactions with doctors and caregivers, measuring heart rate and sweating hands to understand the emotional intensity, examine the movement of the eyes to understand what they pay more attention to. This has allowed us to go beyond what patients say, discover what they feel, remember and look at”.
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How the analysis was carried out
A group of people with chronic blood cancer looked at some examples of interactions between patient-doctor and patient-caregiver, while a series of parameters were examined: the Emotional Index (which measures skin conductance and heart rate; the Cognitive engagement obtained from the electrical signal produced by the brain (measures the degree of interest in a stimulus); the Memorization Index (analyses the prefrontal area of the brain, detects the degree of memorability of a stimulus by analyzing the activity of theta waves ); Eye Tracking (analysis of eye movement to understand interest and attention towards the stimulus)
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The results of the neurometric analysis
It emerged that patients tend to observe the hematologist’s face and gestures 56% more than the average, as well as his ability to show attention and closeness: for 63% of people this is precisely the element that most affects the liking of the doctor. “For us clinicians it is important to support the patient not only from a scientific point of view, but also through attitudes and words that can help the other feel calmer and safer. The results of this neurometric analysis – he says Elisabetta AbruzzeseHematology S. Eugenio Hospital, ASL Roma2 – they show us, for example, how to use simple language and welcome all their doubts to improve the emotional involvement of our clients”.
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Family relationships
If 1 out of 2 patients complain of overprotective behavior from their loved ones, 3 out of 4 say they appreciate it when family and friends involve them in daily activities: an attitude of reciprocity that determines positive emotional peaks. “Chronic blood cancer accompanies the person throughout their life and therefore sometimes becomes a real obsession. This is why the mental well-being of us patients improves, as confirmed by the results of this neurometric analysis, when those close to us try and manage to distract us. Furthermore, even small gestures and phrases of esteem, as well as the ability to work as a team, record high rates of emotional involvement”, he comments Antonella BaronPresident AIPAMM.
Ten practical tips for the relationship with the doctor
The CONNESSIONI DI VITA guide was born out of the results of the neurometric analysis – thanks to the advice of the AIPAMM patient association and the hematologists of the board of MIELO-Spieghi – which demonstrates how simple it can be to establish constructive and quality relationships, capable of difference in the daily life of those living with a chronic blood cancer. The guide contains ten practical tips also for the doctor. It has been seen, for example, that the use of reassuring phrases – such as for example «You mustn’t be afraid, because there are many treatments available», «There are various therapeutic options» – shows an increase in the positive emotional involvement of the patient. This confirms the importance of bringing the disease to a practical level and explaining the possibilities offered by science and therapeutic advances. Another important piece of advice concerns empathy. The patient wants his doctor to call him by name, show interest in his state of mind and his life story, establish a deep and empathic bond with him. Furthermore, the ability to go beyond the clinical data and consider the patient’s personal experience affects the doctor’s degree of trust and perception of competence.
Tips for staying healthy as a family
Advice also for the management of family and friendship relationships. The analysis revealed how important the spirit of collaboration is. In fact, building, planning, designing are activities that keep the spirit and body alive, especially if done together with loved ones. This creates a sense of belonging and team in which the patient has an active role. The guide explains that it is important to help the patient not to think only about the disease: to encourage him to carry out small daily activities, to underline the opportunities, to go beyond the limits and difficulties that a chronic blood cancer can entail. It will benefit not only the patient, but also the caregiver: in fact, even family and friends need rest and normality to better support their loved one. The guide is available on the website www.alleatiperlasalute.it/mielo-spieghi and on the Facebook page (https://www.facebook.com/MieloSpieghi).
The MieloSpieghi campaign
MIELO-Spieghi is the first awareness and information campaign on chronic myeloproliferative neoplasms (Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis) promoted by Novartis, in collaboration with AIPAMM and under the patronage of AIL and the MPN Advocates Network. Born as a Facebook page, it has consolidated as a point of reference for patients and caregivers and today can count on a community of over 32,000 people who actively interact on the platform. “Our commitment to hematology takes the form of initiatives to help patients manage the disease actively and consciously. Connessioni di Vita was born with this objective in mind, the first guide that aims to improve the daily interactions of those living with chronic blood cancer”, he concludes Chiara Gnocchi, Country Communication & Patient Engagement Head Novartis Italy
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