THE “MARFAN SCHOOL” PROJECT
Foreword:
Improving culture on Marfan syndrome means putting health professionals in the condition to formulate a suspected diagnosis earlier, preventing the risks connected with the complications of the disease, choosing the best therapeutic approach and, for patients, dealing with life in a conscious and rational manner, including as regards having children, and avoiding isolation.
Summary of the project:
Multimedial, multilingual information (patient target) and training (health professional target) project on Marfan syndrome, using video lessons that vary in duration according to the target and graphic material (in digital and printed formats) to spread awareness concerning Marfan’s syndrome and favour early diagnosis.
Key words: Marfan syndrome – Training – Information – Early diagnosis – Multimedial approach
Partners:
– MarfanClinic
– Swiss Marfan Foundation
– JPeter Association
Target:
a) General practitioners – Primary care paediatricians – Specialists
b) GPs, specialists, health maintenance organisations (HMO), hospitals and clinics
c) Patients
Media:
– Video lessons lasting 3-5 minutes (patient target)
– Video lessons lasting 5-15 minutes (health professional target)
– Translation into 4 languages (Italian, German, French, English) – possible subsequent translation into Spanish
– Multilingual graphic materials (lessons or leaflets, depending on the target) in digital/printed format
– CD-ROM/DVD media (media for external teaching, where applicable)
Diffusion channels:
– Association website
– YouTube/Facebook
– Mobile (Android/IOS)
Professional refresher training channels:
– D-learning (DL) option for doctors
Content (Patient Area) = 12 x 3-5 minute videos
– Marfan syndrome – Natural history
– Genetic aspects
– Psychological aspects
– Criteria for diagnosis
– Marfan in children
– Medication
– Surgical treatment (heart surgery)
– Surgical treatment (ophthalmology and orthopaedics)
– Keeping an eye on things (follow-up)
– Counselling for couples
– Marfan and childbirth
– Practicing sport safely
– Legal rights
Leaflets could be created in PDF format for e-mail use or in printed format for use during events or to be sent by mail.
Content (Health Professional/Doctor Area) = 22 x 5-10 minute videos
– Marfan syndrome – Epidemiology and natural history
– Genetic aspects
– Criteria for diagnosis
– Clinical and instrumental aspects (heart and peripheral vessels)
– Clinical and instrumental aspects (bones and eyes)
– Clinical and instrumental aspects (Ear-nose-throat and lungs)
– Clinical and instrumental aspects (teeth and the gastrointestinal tract)
– Marfan in the paediatric age
– Psychological aspects
– Medication
– Heart surgery treatment (mitral valve)
– Heart surgery treatment (aorta)
– Vascular surgery treatment (abdominal aorta)
– Eye surgery treatment
– Orthopaedic surgery treatment (scoliosis and foot)
– Physical medicine treatment
– Cerebral aneurysms and neurosurgery
– Cardiology follow-up
– General follow-up (adult and child)
– Counselling for couples
– Marfan and childbirth
– Practicing sport safely
– Legal rights
– Marfan and work
Scientific partners:
– The creation of the videos could involve all MarfanClinic specialists and could be based on video interviews with key specialists, including those belonging to the Swiss Marfan Foundation, in order to favour the identification process for the distribution of the material in Switzerland.
– Each video will show the partners’ logos and mention the contribution of the clinical facilities taking part in its creation. Project sponsors and the partners’ contact details will be shown at the end of each video.
Diffusion channels:
– The video material could be made available for autonomous use by Partners on their websites or alternatively it could be arranged on a standard link page that can only be accessed from partners’ websites. The same applies for communication through Facebook or YouTube.
D-Learning
– The Marfan School project could become a D-learning package managed directly by the Partners (in the case of Scientific Providers) or through authorised facilities in the countries of distribution.
– For D-learning (DL) purposes, a graphic version of each video will be prepared and made available in downloadable PDF format and a sequence of questions will be prepared to assess the level of learning and therefore the passing of the course. The question and answer assessment phase could be organised online, and the participation and final test certificate sent out at the end of the course.
Residential courses:
– Training videos could be made available on CD-ROM/DVD making it possible to organise local courses in hospital/medical facilities. The CDs could be accompanied by the graphic versions of the individual videos and the assessment sheets to be distributed and collected when complete to assess the level of learning and for the awarding of the training certificate.
Operative aspects (currently being defined):
MarfanClinic
– Specialists
– Preparation of graphic material
– Preparation of DL assessment material
– Communication expertise
– Video cameraman
– IT expert
– Format artwork
– Maintenance
Swiss Marfan Foundation
– German – French – English translation
– Specialists
JPeter Association
– Organising Secretariat