Elena Anna Boccalandro
IRCCS Ca' Granda Maggiore Policlinico Hospital Foundation and Fondazione Villa Centre, Milan, Italy
Project title: Intelligent Gamengines for home rehabilitation in children with hemophilia and target joints
Project description: Home rehabilitation programs improve the functional status in persons with chronic diseases, such as persons with hemophilia (PWH). However, in order to be effective and achieve the expected results, rehabilitation programs must be conducted regularly over prolonged periods of time. When patients find a rehabilitation program pleasant and enjoyable, their compliance and willingness to continue it regularly does indeed increase. A high level of motivation will lead to higher adherence and positively affect rehab outcomes.
Computer-based games appear to be suitable tools to guide rehab programs, because of their ability to engage and amuse the users. The low-cost tracking devices introduced in the entertainment market allow to measure and monitor reliably, in real time and at home, players’ motion with a hand-free approach. However, commercially available videogames lack the peculiar functions required for musculoskeletal rehabilitation. For instance, in the field of hemophilia games must be adapted to the peculiar functional status of each PWH. Most importantly, because at home no physiotherapist is available the game itself should analyze PWH motion and provide a real-time, clear feedback to the patient on motion correctness to avoid or correct maladaption. It should also compute and provide structured feedback to the physiotherapist on performances and progress.
In order to fulfill these goals and to obtain better results we developed a rehabilitation program based on exergames tailored to children with hemophilia. Exergames have been developed in collaboration with “serious game” developers of the Department of Computer Science of the University of Milan (IGER – Intelligent Game Engine for Rehabilitation).
Cranio-Maxillofacial Surgery Clinic, Medical University in Lodz, Poland
Project title: The relationship between quality of life and changes in the stomatognathic system, as well as predisposition for periodontal disorders in patients with congenital haemophilia with accounting for genetic factors and selected anthropometric parameters.
Project description: Project description: Dental care is one of the secondary challenges associated with haemophilia. On one hand haemophilia patients have several risk factors for periodontal diseases and they are at risk of bleedings resulting from improper treatment and some dental procedures. Additionally, periodontal diseases have been associated with increased cardiovascular risk and decreased quality of life, that is overshadowed by the generally lower Quality of life of haemophilia patients resulting from haemophilia treatment and bleeding complications. Bleeding into the temporomandibular joint resulting from severe haemophilia may lead to arthropathic changes, leading to pain, limiting joint mechanics and range of movement. This may in turn lead to dietary changes, limiting of proper articulation and inhibition of yawning. There are several aims in the project:
Natacha Rosso and Noémie Resseguier
Hôpitaux de Marseille, France
Project title: Occupational integration of adults with severe haemophilia in France: a study based on the FranceCoag cohort.
Project description: Severe hemophilia is a rare disease characterized by spontaneous bleedings from childhood, which may lead to various complications and impair the health-related quality of life. Improvements in hemophilia care over the last decades might lead to expectation of a near-normal quality of life for adults with hemophilia. However, during the transition to adult life, specific issues persist, including issues related to the social functioning.
Studies conducted in the framework of pediatric chronic diseases showed a higher education level but a lower access to employment than in the general population. the context of pediatric cancers and cystic fibrosis. To our knowledge, few studies have been conducted to assess the impact of hemophilia and its treatment on social functioning of hemophiliac adults. In addition, the replicability of these results could be limited by the specific socio-economic national context.
The aim of this project is to assess and to compare occupational issues in a national cohort of adults with severe hemophilia in France, with a reference group from the French general population, in order to describe the impact of this disease on occupational integration.
Participants aged from 18 to 60 y.o. will be contacted by the Hemophilia Treatment Centres participating in the FranceCoag Network. To each of these participants (about 1500), we will propose to fill a self-administered questionnaire form in (socio-demographics data, occupational integration data and psycho-behavioural outcomes.
The expected results will provide new elements about the occupational issues in adults with severe hemophilia. A better understanding of the consequences of the disease on daily life seems to be primordial in a global systematic perspective of health that seeks to take care of these adults not only as patients but also as persons in their social environment.