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Impact of a Coordinated Dietetic-adapted Physical Activity Program on the Percentage of Lean Body Mass in Adults With Cystic Fibrosis Treated With Elexacaftor-Tezacaftor-Ivacaftor: Multicentre Randomised Controlled Trial

Not Applicable
Recruiting
Conditions
Cystic Fibrosis
Interventions
Other: DIAPASOM program
Registration Number
NCT06457451
Lead Sponsor
University Hospital, Tours
Brief Summary

Cystic fibrosis is an autosomal recessive inherited disease linked to various mutations in the gene coding for the Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) protein, with respiratory and digestive disorders conditioning the prognosis.

Digestive damage may be responsible for malnutrition of multifactorial origin (insufficient energy intake, increased energy losses, increased basal metabolic rate), and studies show a correlation between reduced lean body mass and respiratory function.

In 2019, the French National Authority for Health (HAS) redefined undernutrition by including "quantified reduction in muscle mass and/or function" as a phenotypic diagnostic criterion.

Elexacaftor-Tezacaftor-Ivacaftor, an innovative therapy (authorization in 2021) for this population, aims to restore the function of CFTR protein. Significant improvements in lung function and weight gain were observed from the first weeks of treatment. These improvements have also led to the emergence of lesser-known nutritional problems in these patients, such as overweight and the development of metabolic complications. Nonetheless, new management options in terms of dietary adjustments and adapted physical activity for these patients are possible, given the development of their abilities.

Adapted Physical Activity (APA) helps to improve general muscular function by strengthening respiratory and skeletal muscles, improving aerobic capacity, and aiding bronchial drainage through muscle strengthening and endurance work. Maintaining or even increasing muscle mass depends not only on appropriate food intake and optimal dietary management, but also on regular physical activity, as recommended by the HAS.

Our hypothesis is therefore that a structured dietetic/adapted physical activity program (DIAPASOM program) can increase the percentage of lean body mass at 12 months in adult cystic fibrosis patients treated with Elexacaftor-Tezacaftor-Ivacaftor.

Detailed Description

Cystic fibrosis is an autosomal recessive inherited disease linked to various mutations in the gene coding for the Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) protein, with respiratory and digestive disorders conditioning the prognosis.

Digestive damage may be responsible for malnutrition of multifactorial origin (insufficient energy intake, increased energy losses, increased basal metabolic rate), and studies show a correlation between reduced lean body mass and respiratory function.

In 2019, the French National Authority for Health (HAS) redefined undernutrition by including "quantified reduction in muscle mass and/or function" as a phenotypic diagnostic criterion.

Elexacaftor-Tezacaftor-Ivacaftor, an innovative therapy (authorization in 2021) for this population, aims to restore the function of CFTR protein. Significant improvements in lung function and weight gain were observed from the first weeks of treatment. These improvements have also led to the emergence of lesser-known nutritional problems in these patients, such as overweight and the development of metabolic complications. Nonetheless, new management options in terms of dietary adjustments and adapted physical activity for these patients are possible, given the development of their abilities.

Adapted Physical Activity (APA) helps to improve general muscular function by strengthening respiratory and skeletal muscles, improving aerobic capacity, and aiding bronchial drainage through muscle strengthening and endurance work. Maintaining or even increasing muscle mass depends not only on appropriate food intake and optimal dietary management, but also on regular physical activity, as recommended by the HAS.

Our hypothesis is therefore that a structured dietetic/adapted physical activity program (DIAPASOM program) can increase the percentage of lean body mass at 12 months in adult cystic fibrosis patients treated with Elexacaftor-Tezacaftor-Ivacaftor.

Recruitment & Eligibility

Status
RECRUITING
Sex
All
Target Recruitment
100
Inclusion Criteria
  • Subject aged 18 or over
  • Suffering from cystic fibrosis
  • Treated with Elexacaftor-Tezacaftor-Ivacaftor for at least 6 months
  • Affiliated to a social security scheme
  • with a signed Informed Consent form.
Exclusion Criteria
  • Pregnant and breast-feeding women
  • Subject under legal protection, guardianship or curatorship
  • Subject whose physical activity is not medically authorised or whose physical and motor capacities do not allow them to take part in physical activity.
  • Subject who is unable to comply with the requirements of the DIAPASOM program
  • Difficulty in understanding the self-questionnaires
  • Wearing a pacemaker or metal prosthesis
  • Fluid retention

Study & Design

Study Type
INTERVENTIONAL
Study Design
PARALLEL
Arm && Interventions
GroupInterventionDescription
DIAPASOM programDIAPASOM programProgram of adapted physical activity carried out remotely by a specialized instructor for one year: * Phase 1 (3 months): 2 supervised weekly sessions. * Phase 2 (3months): 1 supervised weekly session and 1 independent weekly session. * Phase 3 (6months): 2 independent weekly sessions with monthly telephone follow-up. Combined with personalized dietetic care by a dietician for one year too: In person dietetic consultation every 3 months to monitor personalized objectives, with telephone follow-up between each face-to-face consultation to improve compliance.
Primary Outcome Measures
NameTimeMethod
Evolution of percentage of patients lean mass as a percentage of body massFrom randomization, up to 12 months

Impedancemetry

Secondary Outcome Measures
NameTimeMethod
Evolution of percentage of patients fat mass as a percentage of body massFrom randomization, up to 12 months

impedancemetry

Weight evolutionFrom randomization, up to 12 months

Weight measurement

Body Mass Index (BMI) evolutionFrom randomization, up to 12 months

Weight and height measurement

Cardio-respiratory enduranceFrom randomization, up to 12 months

6-Minute Walk Test (6MWT)

Bilateral Handgrip strengthFrom randomization, up to 12 months

Handgrip Test

Lower limb muscle powerFrom randomization, up to 12 months

30-second Sit-to-Stand test

Upper limb muscle powerFrom randomization, up to 12 months

Pump test

Static trunck extensors muscle enduranceFrom randomization, up to 12 months

"Superman" test

Static trunck flexors muscle enduranceFrom randomization, up to 12 months

Shirado-Ito test

Balance between static muscular endurance of extensors and flexorsFrom randomization, up to 12 months

Calculated using the Shirado-Ito/"Superman" ratio

Posterior chain flexibility (Hamstring, hips and lower back)From randomization, up to 12 months

Front trunk flexion test

Upper limb flexibilityFrom randomization, up to 12 months

scapulohumeral mobility test

Forced Expiratory Volume in 1 second (FEV1)From randomization, up to 12 months

Spirometry

Physical activity volume and sedentary timeFrom randomization, up to 12 months

Physical activity and sedentary behavior self-questionnaire (ONAPS-PAQ)

Evolution of quality of lifeFrom randomization, up to 12 months

Cystic Fibrosis Questionnaire-Revised (CFQR-14)

Program feedback questionnaire12 months after randomization

Self-questionnaire about how patients in the experimental group feel about the program

Trial Locations

Locations (4)

Cystic Fibrosis Resource and Competence Centre, University Hospital, Angers

🇫🇷

Angers, France

Cystic Fibrosis Resource and Competence Centre, Fondation Ildys, Roscoff

🇫🇷

Roscoff, France

Cystic Fibrosis Resource and Competence Centre, University Hospital, Tours

🇫🇷

Tours, France

Cystic Fibrosis Resource and Competence Centre, Hospital, Tours

🇫🇷

Vannes, France

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