• Nancy Kentish-Barnes, Virginie Souppart, Zoé Cohen-Solal, Ygal Benhamou, Paul Coppo, Agnès Veyradier, and Elie Azoulay.
• AP-HP, Saint Louis Hospital, Medical Intensive Care, Famiréa Research Group, Paris, France. Electronic address: nancy.kentish@aphp.fr.
• J Crit Care. 2023 Dec 1; 78: 154366154366.

BackgroundUsing qualitative interviews, our objective was to better understand the experience of patients with Thrombotic microangiopathies (TMA), from discovering their disease in the ICU to the psychological, emotional, and social specifics of living with this rare disorder.Material And MethodsPatients were recruited at seven TMA centers belonging to the French national TMA referral network. A total of 15 patients, 15 relatives and 12 healthcare professionals participated. A majority of patients (n = 11/15) were women, median age was 41 (range 29-62) years, and median time elapsed since diagnosis was 6 (range 2-11) years. Interviews were analysed using thematic analysis.ResultsWe derived 3 major themes from qualitative analysis: 1) Discovering TMA: experiencing a life-threatening emergency with open eyes; 2) TMA: a complex and diverse disease and care plan; 3) Living with TMA: taming fear and loneliness.ConclusionsPatients with TMA share common experiences with patients with other rare diseases, but also specific experiences related to their illness. Improved information at the onset and during the course of the illness, associated with enhanced care coordination plans would help TMA patients better cope with their illness and adhere to their care projects.Copyright © 2023 Elsevier Inc. All rights reserved.

13 keywords...

hide…