• C Mettler, A Daguzan, M-C Lagouanelle, A Briantais, P Ducros, S Laborde, S Gouiran, N Schleinitz, B Faucher, and M Ebbo.
• Département de médecine interne, Centre de référence constitutif des cytopénies auto-immunes de l'adulte (CERECAI), hôpital de la Timone, Aix-Marseille université, Assistance publique-Hôpitaux de Marseille, Marseille, France. Electronic address: mettler.camille.pro@gmail.com.
• Rev Med Interne. 2021 Jan 1; 42 (1): 3-10.

IntroductionImmune thrombocytopenia (ITP) durably affects quality of life in patients. Patient education aims at improving their self-care and psychosocial skills, allowing them be more autonomous, to prevent avoidable complications, and to maintain or improve quality of life. The aim of this study was to assess patients' and caregivers' expectations regarding patient education in ITP.MethodITP Patients and caregivers were asked about topics that should be addressed in a patient education program through a digital anonymous survey. Their responses were analyzed both qualitatively and quantitatively. A double-blind keyword attribution of the answers was carried out by two physicians and then faced until consensus was found.ResultsThirty-eight ITP patients were included: 68% were less than 50 years old and 84% had chronic ITP. On the other hand, twenty-five caregivers were included. Caregivers raised more topics related to the cognitive domain than patients. The psychoaffective and motivational topics tended to be more represented in patients' responses. Only 53% of topics were mentioned by both patients and caregivers.ConclusionThese discrepancies emphasize the differences between patients and caregivers' expectations regarding a patient education program in ITP, and thus the relevance of patient-caregiver co-construction of such programs.Copyright © 2020 Société Nationale Française de Médecine Interne (SNFMI). Published by Elsevier Masson SAS. All rights reserved.

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