“Il faut continuer à poser des questions” patient reported outcome measures in cystic fibrosis: An anthropological perspective

Cystic fibrosis (CF) is the most common life-limiting, autosomal recessive disease, affecting approximately 48,000 people in Europe. Symptoms include a build-up of mucus in the lungs, digestive tract and other organs resulting in lifelong complex medical management and wide-ranging challenges for pwCF and their families [1]. In recent years, there has been growing interest amongst regulatory bodies and research regarding integration of patient perspective of their illness and treatment options into the wider healthcare scene [2 –4].

Source: Journal of Cystic Fibrosis - February 26, 2021 Category: Respiratory Medicine Authors: Rosa Coucke, Audrey Chansard, V éronique Bontemps, Dominique Grenet, Dominique Hubert, Clémence Martin, Elise Lammertyn, Emmanuelle Bardin, Veerle Bulteel, Frédérique Chedevergne, Muriel Le Bourgeois, Pierre-Régis Burgel, Isabelle Honore, Hilde de Ke Tags: Original Article Source Type: research