Background Cystic fibrosis is a life-threatening genetic disorder responsible for pulmonary failure and multi-systemic complications involving specific and large medical care burden. To date, no program has shown its effectiveness in improving therapeutic adherence. A new approach to develop a co-constructed program involving patients and professionals may contribute to improve therapeutic adherence. Objectives The aim of the MUCOBS-Trial project is to create a program to increase therapeutic adherence and to evaluate its efficacy in adult patients with cystic fibrosis in 3 CF centers in France.
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Enrollment
450
* "information" -\> Reminders of medication: mobile application * "Motivation" -\> Coaching by patients: intervention or coaching by an expert patient, animation of a social network of patients * "Behavioral skills" -\> Accompaniment by professionals: therapeutic education, assessment of membership during medical visits, prioritization of treatments
CRCM mixte, Hôpital Estaing
Clermont-Ferrand, France
RECRUITINGCRCM Adulte CHU Grenoble Alpes
La Tronche, France
RECRUITINGCentre de Ressources et de Compétences de la Mucoviscidose adulte de Lyon - Centre Hospitalier Lyon Sud
Pierre-Bénite, France
RECRUITINGMedication Adherence (coverage rate)
Continuous multiple-interval measures of medication availability (CMA), including: * Medications for obstructive airway syndromes * Aerosolized bronchial fluidifier * Inhaled antibiotics * Vitamins * Hepatic and biliary therapeutics * Pancreatic enzyme replacement therapy * Medicinal products for acid disorders * Diabetes medications these measurements (coverage rate for each therapeutic class) will be aggregated to evaluate the medication adherence.
Time frame: 18 months.
Adherence to medications for obstructive airway syndromes
Continuous multiple-interval measures of medication availability (CMA) for Medications for obstructive airway syndromes
Time frame: 18 months.
Adherence to physiotherapy
Ratio between the number of acts refunded by the Health Insurance and the theoretical number of acts necessary for compliance with the prescription.
Time frame: 18 months
Adherence score evaluated by self-administered questionnaire
Measured from a self-administered questionnaire, adapted from the Cystic Fibrosis Compliance questionnaire
Time frame: 6 and 18 months
Cystic Fibrosis Knowledge Scale
Measured from a self-knowledge questionnaire adapted from the Cystic Fibrosis Knowledge Scale
Time frame: 6 and 18 months
Quality of life measured by Cystic fibrosis Questionnaire (CFQ-R)
Measured by Cystic fibrosis Questionnaire (CFQ-R) specific to cystic fibrosis and validated in French
Time frame: 6 and 18 months
Clinical evolution : Forced expiratory volume in 1 s as a percentage of predicted (%FEV1)
Forced expiratory volume in 1 s as a percentage of predicted (%FEV1) and body mass index (BMI) will be collected during the patient's usual follow-up, on the observational and interventional phases
Time frame: 18 months
Clinical evolution : body mass index (BMI)
Body mass index (BMI) will be collected during the patient's usual follow-up, on the observational and interventional phases
Time frame: 18 months
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