RECRUITINGOBSERVATIONAL

CF Organization of Care in the Era of Highly Effective Modulator.

Rethinking CF Organization of Care in the Era of Highly Effective Modulator: a Nationwide Research Program HORIZON.

About This Trial

Recently, triple therapy has made it possible to extend access to these modulators to a large proportion of the patient population, with spectacular clinical benefits, provided the patient carries at least one F508del mutation. The hypothesis is that the arrival of CFTRmHEs has considerably altered the way cystic fibrosis is managed, requiring a rethink of how the CRCMs are organised, and a redefinition of the practices and missions of professionals, as well as the patient-professional relationship.

Who May Be Eligible (Plain English)

Who May Qualify: - Patients aged 6 and over with cystic fibrosis treated with CFTRmHE for at least 12 months - Patients aged over 6 years with cystic fibrosis not eligible for CFTRmHE treatment - Families of patients under 18 years of age - Professionals working in a CRCM for more than 12 months, physiotherapists and community nurses involved in the management of cystic fibrosis. Exclusion Criteria \* : - Refusal to participate - Persons deprived of their liberty by judicial or administrative decision - Persons under psychiatric care - Adults under legal protection (guardianship, curatorship) - Persons not affiliated to a social security scheme or beneficiaries of a similar scheme Always talk to your doctor about whether this trial is right for you.

Original Eligibility Criteria

View original clinical language

Inclusion Criteria: * Patients aged 6 and over with cystic fibrosis treated with CFTRmHE for at least 12 months * Patients aged over 6 years with cystic fibrosis not eligible for CFTRmHE treatment * Families of patients under 18 years of age * Professionals working in a CRCM for more than 12 months, physiotherapists and community nurses involved in the management of cystic fibrosis. Exclusion Criteria \* : * Refusal to participate * Persons deprived of their liberty by judicial or administrative decision * Persons under psychiatric care * Adults under legal protection (guardianship, curatorship) * Persons not affiliated to a social security scheme or beneficiaries of a similar scheme

Treatments Being Tested

OTHER

Intervention mapping

Intervention mapping is a model combining patient and professional questionnaires and a qualitative survey using individual interviews with patients and focus groups with professionals to identify the obstacles and levers to change at the level of patients, professionals and organisations.

Locations (1)

Groupement Hospitalier Est Pediatric CFcenter

Lyon, France