A multidisciplinary and interprofessional therapeutic education program for patients suffering from amyloidosis: Amylo-PEP (Amyloidosis patient education program)

Abstract

Amyloidosis is a severe disease in which proteins (amyloid fibrils) build up in tissues. Numerous organs can be affected, resulting in multiple vascular, cardiac, neuropathic, digestive and kidney dysfunctions. Three forms of amyloidosis particularly affect the heart: AL amyloidosis (hematologic) and hereditary or senile transthyretin-related amyloidosis. These dysfunctions disable the patient and induce a loss of independence and a decline of his quality of life. Objectives are to improving global treatment for patients suffering from amyloidosis by integrating it to a therapeutic education approach. Maintaining their quality of life by offering them knowledge and skills to better handle their disease. Carrying out a global therapeutic education program for patients suffering from amyloidosis, with the participation of ‘resource patients’ and of the French Association Against Amyloidosis (from conception until final evaluation). Twenty-one therapeutic education workshops have been created for patients and their helpers (cf. Fig. 1 below) and organized by type of dysfunction, of treatment, of therapeutic approach or support of which 5 work groups prevent denutrition and adapt to the type of denutrition. Creating a self-completed ‘AmyloAFFECT’ questionnaire, coupled with an initial check-up, makes it possible to assess patients’ needs and direct them towards work groups. The program is evaluated through assessments of acquired skills and whether or not quality of life is maintained (ODD, AmyloBURDEN). Amylo-PEP has been created two years ago and is validated by the Regional Health Authority since 2017. Evaluating this program will assess if to some extent it has improved or stabilized quality of life for patients suffering from cardiac amyloidosis, as well as if it has had a positive impact on knowledge and understanding, on the patient's global treatment and on communication within the multidisciplinary team.