Parcours et qualité de vie des patients atteints de mucoviscidose. Premiers résultats de l’enquête « Mucoviscidose, famille et société »
Collection : Documents de travail
n° 273, 2023
Cystic fibrosis is a rare, chronic, and progressive genetic disorder, usually diagnosed in early childhood. In view of the seriousness of this disease, various measures have been implemented in France, including the creation of a national register to monitor affected individuals and
collect annual data on their main health indicators. Focusing on trajectories and quality of life, the Cystic Fibrosis, Family, and Society Survey aims to supplement the register’s data gathered in three ways: by compiling individual patient biographies, by establishing connections
between their biomedical and sociodemographic data, and by comparing the characteristics of 2 patients with those of the general population. The survey was targeted at patients aged 14 years or over who were being monitored at a healthcare centre participating in the register.
Patients were invited to complete a retrospective online questionnaire exploring five topics: schooling, work, family, housing, and quality of life. The total number of respondents was 454 patients. An analysis of the questionnaire, presented here, provides an overview of the main sociodemographic characteristics of individuals affected by cystic fibrosis.
