In our cohort, CF patients spent an average of nearly 20 h a week in respiratory therapy, within a wide range of between 8 h to almost 36 h a week. PA consumes almost half of the time. Physicians have to take into consideration the burden of the treatment, to optimise the therapy.
-Background: Pulmonary disease remains the most common cause of morbidity and mortality in cystic fibrosis. The clearing of mucus by chest physiotherapy is a major keystone of treatment. Daily therapy is time consuming, with respiratory therapy, inhalation therapy and a lot of medications to be taken all day long. Treatment burden becomes always a reason for intra-familial conflicts and stress. Adherence to treatment is a main issue, and influences the efficiency of physiotherapy and inhalation Objective: The objective was to implement and evaluate TPE in a pediatric cystic fibrosis consultation. Method: Open interventional study in patient ≥6 years of age. Patients were followed on their regular 3-month basis over 2 years. Interventional education by cystic fibrosis physician and nurse took place at each visit with assessment once yearly. At visit 1, a contract defining the content of the educational program was discussed. Primary endpoint: Evolution of FEV1 and FEF25-75%. Secondary endpoint: Evaluation of disease knowledge and quality of life (CFQ r ). At the end of the study we tested the knowledge about nutritional aspects of the disease in the study group. Results: Out of 32 patients from 6 to 16 years, 17 accepted the study. FEV1% predicted increased 5.3% in the intervention group. Conclusion: Using TPE, there is a clear trend to improve lung functions (+2.65% annual rate of change of FEV1% predicted). TPE could be an important strategy to stabilize lung function.Key words: cystic fibrosis / child / therapeutic education / lung function / quality of life Résumé -Amélioration des fonctions pulmonaires grâce à un programme multidisciplinaire d'éducation thé-rapeutique dans une clinique pédiatrique de mucoviscidose. Introduction : L'atteinte pulmonaire reste la cause principale de morbidité et de mortalité dans la mucoviscidose. Le drainage du mucus par la physiothérapie respiratoire est un élément clé du traitement. Le traitement quotidien est lourd, avec drainage autogène, inhalations de médicaments ainsi que de nombreux traitements à prendre tout au long de la journée. La charge quotidienne engendre des conflits intrafamiliaux et un stress important. La compliance au traitement est un enjeu majeur qui influence l'efficacité de la physiothérapie et des inhalations. Objectifs : L'objectif est de créer une structure d'éducation thérapeutique au sein de notre consultation pédiatrique de mucoviscidose et de l'évaluer. Méthode : étude interventionnelle ouverte chez des patients de ≥ 6 ans. Les patients ont été suivis au rythme habituel, chaque 3 mois pendant 2 ans. Une séance d'éduca-tion thérapeutique se faisait à chaque consultation, soit par le médecin en charge de la consultation, soit par l'infirmière référente. À la 1 e visite, un contrat éducatif est défini avec le patient. Objectif primaire : évolution du VEMS et du VEF25-75%. Objectifs secondaires : Évaluation de la connaissance de la maladie et de la qualité de vie des patients (CFQ r ). À la fin de l'étude, la connaissance des patients a été ...
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