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The burden of illness in a survey on care paths for Beta-Thalassemia Major: an interview to Gian Luca Forni and Marco Bianchi

The project “The value for person with Beta-Thalassemia Major. Tools to improve the quality of life and its healthcare services” by ISTUD Foundation aims to reveal the burden of beta-thalassemia major on quality of life of people facing this disease, from a point of view not only physical, but also psychological, emotional, social and economic. The project has been realized thanks to the collaboration of UNITED Onlus (Union of Associations for Rare Anemias, Thalassemia, and Drepanocytosis), and of SITE (Italian Society for Thalassemia and Hemoglobinopathies), with the unconditioned grant of Novartis. To analyze further the contribution of the qualitative method to the research, we host an interview to Gian Luca Forni, MD (Managing Director of SSD Emathology at Galliera Hospital (Genova), member of the board of the Scientific Society for the Study of Thalassemia and Hemoglobinopathies, Professor at the Specialization School in Hematology of the University of Genova, President of SITE), and to Marco Bianchi, president of UNITED Onlus. 

Q. It is important to integrate quantitative and qualitative surveys, the latest involving emotional and personal life sphere?

GF. It is certainly important, in particular for patients with beta-thalassemia major. It is a chronic disease, there are patients that have been facing it since fifty years: they live with a pathology that, during years, is changing with them, as changes the prognosis. Patients are the first witnesses of this evolution. Quantitative methods are more suitable to investigate the short-middle period, while qualitative methods give us a more complete overview, involving that emotional sphere that quantitative methods do not stress.

MB. Yes, because they help to understand those dimensions that quantitative surveys do not transfer completely. In the case of our pathology, there is an important part: experience, that does not shine through quantitative analysis. When was proposed me this kind of survey, I was very glad. For us, as association, is important for understanding not only territorial differences, but also how people can react based on culture and patient’s tradition in the different regions. With the same treatment, someone can be glad, others less. Understanding this is very important.

Q. Basing on your experience, which extra value does people witnessing give to the survey?

GF. Personal witnessing mainly highlights aspects going beyond the more specific healthcare part, then all patient’s life outside places in which pathology is lived and treated, and this helps to point out even our lacks. Maybe we are more used to results we obtain, that are also gratifying. However, doing so we leave the concept of prognosis quoad vitam, and we see the emotional life of the patient.

MB. Narrative is important for transferring the emotional part that people cannot express in close questions. Even as association, we wrote some books reporting stories of the everyday condition of patients, and I think that narrative lets emerge an experience that is impossible to find through quantitative methods. I think that narrative is closer to patients’ reality. Sometimes it can result even contradictory, but when one starts narrating, he is more honest in answering respect to when he answers to close questions.

Q. From this work, that used also the narrative tool, which main value does emerge for people with beta-talassemia? Which non-value?

GF. We have all the data to analyze completely*, so we talk about the first ones we have. In these, it seems there is a strange difference: the perception the patients give about their quality of life is unexpectedly high, while they pointed out lacks as for the level of self-realization on work. There is the lacking possibility to fully self-realize, above all in work. These two elements are antagonist: on one hand, there is a good quality of life, on the other hand patients see the work sphere as not realized. We should analyze this aspect in order to understand the why of this apparent dualism, which are its mechanisms. This survey precisely serves to pass to a further phase of analysis: results have to be elaborated better, even in team, in order to reach some conclusions, also on how to care these patients. Vice versa, patients involved in the project could get new sparks to think about the way they face the disease.

MB. My impression is that is emerging an attitude different at a personal level, that is not always the same in people. It is also true that in centers where people are treated in a more precise and current way, it seems to me to see more personal satisfaction, as living with a not serious pathology. With others, instead, is visible a pathology considered serious by themselves. The therapies, the relationship with doctors, are visible. If the doctor succeed to give trust in the clinic, there is surely more satisfaction, and a more positive attitude of people, also towards their own life. As association, an aspect surely positive is the collaboration with medical society, the fact to make narrative surveys with doctors, to see also their experience – because sometimes we patients consider only our point of view. This kind of research unites the two protagonists, patient and doctor: I think that is positive work together in order to have data useful for both. We live our pathology “in defense”, that means that this is not a growing pathology: we defend ourselves from doctors’ disinterest. For us is important the interest in our pathology, also because of complications that we have to know to treat them globally. Furthermore, sometimes is neglected the aspect of the dialogue, that for us is very important: if a person share the aim of care, there is more compliance, the adherence to treatment improves. In this project, as federation of national associations, we would see differences in therapies, but also of the attitude of patients and doctors. Clearly, there are material aspects that we cannot ignore: lack of blood means to cannot do the therapy, and so to not have a full life. If there are no complications, a person can have a normal life, but he must have blood and therapies.

*Survey to be completed.

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