Impacts of the Covid-19 Epidemic and Associated Lockdown Measures on the Management, Health and Behaviors of Cystic Fibrosis Patients During the 2020 Epidemic (MUCONFIN)

Centre Hospitalier Intercommunal Creteil

Status: Completed

Conditions: Cystic Fibrosis in Children; Cystic Fibrosis

Treatments: Behavioral: Interview; Behavioral: Questionnaire

Study type: Observational

Funder types: Other

Identifiers

NCT04463628

MUCONFIN

Details and patient eligibility

About

Impacts of the Covid-19 epidemic and associated lockdown measures on the management, health and behaviors of cystic fibrosis patients during the 2020 epidemic

Full description

The containment of the population in France is a health measure implemented in response to SARS-CoV-2 (Covid-19) infection. For cystic fibrosis, as for many chronic diseases, this disruption is twofold. On the one hand, it affects daily life due to the closure of schools and the introduction of national lockdown, but also the hospital, which has profoundly changed its procedures, which are almost completely focused on the care of patients with Covid-19. This forced transformation was at the expense of its usual role including the management of chronic diseases such as cystic fibrosis. It has an impact on patients' consultations cancelled, rescheduled or replaced by teleconsultations, hospitalisations whether scheduled or during acute exacerbations which are more complicated to organise. Access to treatments is also more difficult (physiotherapy), which can affect compliance. Confinement also profoundly changes the lives of our patients. It changes the way individuals can apprehend their disease and its integration into their everyday life, studies or professional projects. Finally, it is the confrontation with a potentially fatal infection that reminds us of the risks and consequences of a potentially severe chronic disease.

Enrollment: 746 patients

Sex: All

Ages: 14+ years old

Volunteers: Accepts Healthy Volunteers

Inclusion criteria

• Patient with cystic fibrosis (Southern Chlorine > 60 mEq/L and/or presence of 2 pathogenic mutations on the CFTR gene)
• Supported in a French CRCM (Cystic fibrosis Resource and Competence Center)
• Affiliated to a social security scheme
• Non-opposition for participation in the protocol

Exclusion criteria

• Minor patient under 14 years of age
• Computer equipment or internet connection defect

Trial design

746 participants in 1 patient group

Questionnaire and/or interview

Description:

An online questionnaire to assess the quantitative aspect of the impact of lockdown on all areas of the cystic fibrosis patient's health, be it physical, mental or social (using quality of life assessment in particular and interviews in the human and social sciences).

Treatment:

Behavioral: Questionnaire

Behavioral: Interview