Cystic Fibrosis, Cystic Fibrosis in Children
Conditions
Keywords
Lockdown, Covid-19 Epidemic, questionnaire, interview
Brief summary
Impacts of the Covid-19 epidemic and associated lockdown measures on the management, health and behaviors of cystic fibrosis patients during the 2020 epidemic
Detailed 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.
Interventions
BEHAVIORALQuestionnaire
The study questionnaire was constructed as follows: * One part is composed of validated questionnaires: Cystic fibrosis specific self-questionnaire for quality of life, questionnaire for screening for anxiety disorder. * The other part, which was not validated, was constructed as follows: questionnaire on knowledge of Covid-19 adapted to the new exceptional situation (Covid-19 pandemic) and specific questions adapted to the research objective on Covid-19 from the questionnaire of the French Public Health survey, to monitor changes in behaviour and mental health during lockdown
BEHAVIORALInterview
Two interviews in the human and social sciences, conducted by recorded video-conference, will be proposed to 15 patients during and after the lockdown.Two interviews will take place: one during the lockdown and one at 6 months from the first interview (or at the end of the confinement if it lasts more than 6 months). The interviews will be conducted independently of the results of the questionnaire.
Sponsors
Centre Hospitalier Intercommunal Creteil
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
14 Years to No maximum
Healthy volunteers
Yes
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Cancellation or postponement of consultations by the health professional or patient, | Up to 6 months | Number of consultations cancelled or postponed by the health professional or patient of consultations (medical and paramedical), |
| Patient cancellation of teleconsultations/telecare replacement, | Up to 6 months | Number of consultations cancelled by the teleconsultation/replacement patient, |
| Cancellation or postponement by the health care institution or by the patient of hospitalizations (scheduled or unscheduled), | Up to 6 months | Number of consultations cancelled or postponed by the health care institution or by the patient of hospitalizations (acute or scheduled) |
| Change in the modalities of administration of antibiotics cures (oral instead of intravenous administration). | Up to 6 months | Number of patients affected by the change in the modality of administration of antibiotic cures (intravenous instead of intravenous administration). |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Presence or absence of toxic consumption (drug, alcohol) during the lockdown | Up to 6 months | A questionnaire on the presence or absence of toxic consumption |
| Evaluation of the knowledge, experience and social representations of the risk of Covid-19 | Up to 6 months | Experience and social representations of confinement by cystic fibrosis patients (evaluated by qualitative methods) |
| The reduction of each of the elements of care provision and health care utilization: | Up to 6 months | Cancellation or postponement by the patient of consultations (medical or paramedical) * Patient cancellation of teleconsultations/telecare proposed by the health professional * Cancellation or postponement by the patient of hospitalizations (acute or scheduled) |
| Suspected and/or confirmed Covid-19 in patients with cystic fibrosis. | Up to 6 months | Prevalence of suspected and/or confirmed Covid-19 infections in patients with cystic fibrosis |
| Assessing the role of social inequalities in the consequences of lockdown | Up to 6 months | Role of social inequalities in the consequences of containment assessed by qualitative methods |
| The change of modality of administration of antibiotic cures | Up to 6 months | Intravenous instead of intravenous administration |
| Compliance | Up to 6 months | Questionnaire about taking or not taking treatment during confinement |
| Anxiety and stress (at risk of being affected by COVID-19 or at risk of being treated less well) | Up to 6 months | Scale 0-21 |
Countries
France
Outcome results
None listed