Article Text

PDF
OP0240-PARE Announce and explain ankylosing spondylitis, creation of a patient tool
  1. J.-N. Dachicourt1,
  2. L. Grange2,
  3. L. Gossec3
  4. and AFLAR Association Francaise de Lutte Anti Rhumatismale
  1. 1Association Aflar, Paris
  2. 2CHU de Grenoble, Grenoble
  3. 3C.H.U Cochin, Paris, France

Abstract

Background First approach with the disease and spondylitis diagnosis can be a real shock for our patients. They feel the need to look for information by all means available to them: internet, brochures, books, press... Announcement consultations start taking place in France but they remain rare, inadequate, only as part of few therapeutic education programmes.

Objectives Information is vital to improve the patient’s knowledge of its own disease. It stands as a major pilar of therapeutic education next to well-being and savoir-faire. Many information tools exist already for patients with axial spondylitis but few of them allow for real support and help to install a genuine dialogue between the pratician and someone making the first steps as a patient.

Methods This innovative tool was conceived according to modern standards. The themes were precisely chosen. A brainstorming meeting took place with a doctor, a redactor and patients suffering of spondylitis, members of the leading national patients organizations: AFLAR and AFS. It allowed to pinpoint the key messages to deliver to a patient entering the disease.

Results Themes were selected to be broached progressively during the first consultations, with various subjects about the disease and its treatments. They are organized in 9 chapters (Physiopathology; clinical signs; spondylitis: a delicate diagnosis; axial spondylitis treatments; physical activity, food and health; living with spondylitis; social and professional life with spondylitis; therapeutic education and information: be an actor). It comes in the form of a standing document, a practical aspect for a face-to-face consultation. one one side, the doctor’s part, with the selected key points for the patients and actualized scientific data. On the opposite side, an illustrated version for the patient allowing for an open dialogue about spondylitis. At the end, a validation certificate with “take-away” tips to improve one’s own knowledge and care.

Conclusions As a useful and innovative tool, this is the first information support in France precisely designed for the announcement time of axial spondylitis. It was conceived for patients by patients as part of a rigorous scientific framework and can be used during rheumatology consultation as well as therapeutic education sessions. It is the first of a long series of material created according to modern conception standards, placing patient at the heart of the creative process.

Disclosure of Interest None Declared

Statistics from Altmetric.com

Request permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.