Table 1 TPE for patients with systemic vasculitis
Issues to discuss | Educational objectives (non-exhaustive list) |
|---|---|
What is systemic vasculitis? | Be able to describe its clinical manifestations Understand the meaning of biological follow-up, know how to draw from its routine biological assessment the information necessary for following up on it Be able to explain in words the mechanism of the disease (chronic disease, autoimmunity, inflammation of the vessel wall, type of vessel impaired, etc.) Recognize the appearance of signs of clinical and biological activity of the disease and take appropriate action Introduction to the importance of regular monitoring |
Treatments | Understand my treatment, be able to define the action and the side effects of my treatments, understand the side effects Know how to use my treatment on a daily basis, understand the need to take my treatment regularly Adaptation of the hygiene and diet rules when under corticosteroid therapy and/or an immunosuppressant treatment |
Relapse of the disease | Know how to recognize a relapse of their illness Recognize the clinical and biological signs of a relapse Adapt their conduct and know how to call on the right resource/person Identify triggers and learn how to prevent them (especially the importance of good compliance with the treatment) |
Hygiene and diet measures | Know and adapt their diet when under corticosteroid therapy (no excess salt or sugar), adopt a balanced diet Raise awareness of the risk of infection (reminder about vaccination, hygiene rules to avoid infectious contagion) |
Living with it | Express their ideas and feelings about the disease Normalize the experience of fatigue and better use their energy Adopt measures centered on one’s well-being Develop personal adaptation strategies Develop the self-esteem damaged by illness (self-love, self-image, self-confidence) Discover and mobilize resources that can be used to combat the difficulties encountered on a daily basis (psychologist, social workers, investigation into an MDPH file, etc.) Express the impact of the disease on daily life and implement adaptation strategies |