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First National Survey on Haemophilia

Haemophilia is a rare genetic disorder that affects about 700 people in Portugal (World Federation of Haemophilia, Annual Report 2015). Researchers from ICVS and School of Medicine at University of Minho, in collaboration with the Centre of Haemophilia at Centro Hospitalar São João and the Portuguese Haemophilia Association, are conducting a National Survey aiming to analyze the sociodemographic, psychosocial and clinical characteristics of people with Haemophilia, with a particular focus on pain, which is one of the main consequences of Haemophilia related joint bleeds. The preliminary results show evidence of high pain prevalence, significant work and financial burden, and an impact on quality of life. Quality of life is not only influenced by Haemophilia severity, but also by pain experience, symptoms of anxiety and depression, and by people’s perception about Haemophilia, for example in terms of its negative consequences for one’s life. 

Relevance of this work for the society

Healthcare services are more and more focused on subjective outcomes assessed by patients, either in terms of pain, quality of life, individual illness perceptions, psychological characteristics such as anxiety and depression, or satisfaction with treatment. In this sense, a psychosocial characterization of people with Haemophilia, complementary to physician evaluation and objective clinical measures (such as laboratory and imaging studies), is key to implement more efficient health care assistance. The results of this investigation reveal characteristics and needs that can guide the development of more adapted, integrated and multidisciplinary interventions and that, together with usual treatment, can promote better coping for people with Haemophilia. Since there is no cure for Haemophilia, and treatment is only prophylactic, this type of interventions are paramount to contribute for well-being and quality of life of children, teenagers and adults with Haemophilia.

 

The conclusions obtained so far show the relevance of psychosocial dimensions in Haemophilia field and the importance of getting to know individual characteristics that can influence coping with disease, quality of life and emotional well-being. Similarly, it is worth noting the high pain prevalence associated with Haemophilia, that is related to acute bleeding episodes, but that is also chronic in adults who had no prophylactic treatment during most of their life. In the future, it will be important to focus on the systematic assessment of these dimensions and the design of multidisciplinary interventions that target them. Therefore, we aim to develop, implement and evaluate the effectiveness of interventions targeting the promotion of quality of life, emotional regulation and pain control in Haemophilia. In this scope, the cost-effectiveness of psychological interventions has been scientifically demonstrated in several chronic disease states.

 

More informations:

Patrícia Ribeiro Pinto
patipinto@med.uminho.pt

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