Status:
COMPLETED
Health and Quality of Life Assessment Project for Caregivers of Idiopathic Pulmonary Fibrosis Patients
Lead Sponsor:
Centre Hospitalier Universitaire Dijon
Conditions:
Idiopathic Pulmonary Fibrosis
Patient-caregiver Dyads
Eligibility:
All Genders
18+ years
Brief Summary
Idiopathic pulmonary fibrosis (IPF) is a chronic, disabling disease characterized by a progressive and irreversible deterioration in respiratory function, resulting in impaired quality of life (QoL) a...
Eligibility Criteria
Inclusion
- Patient inclusion criteria:
- Patient rescruited from prevalent cases and incidents of patients with IPF according to the diagnostic criteria of the 2011 ATS/ERS/JRS/ALAT recommendations, for which a follow-up is planned or is in progress
- Patient with a validated IPF diagnosis in multidisciplinary discussion in a Competence or Reference Centre. Regardless of the stage of the disease.
- Patient who has not opposed their enrollment in the study
- Adult patient
- Patient able to be assessed every 6 months by principal investigator
- A patient who can designate a non-professional primary caregiver regardless of kinship, age or involvement with the patient (the primary caregiver is defined as the person who works most frequently with the patient). Only one caregiver is retained per patient.
- Patient with no memory or comprehension problems and able to read and write French
- Caregiver
- Caregiver designated by the patient as his or her primary caregiver
- Caregiver who has not opposed their participation in the study
- Adult caregiver
- Caregiver with no comprehension problems and able to read and write in French
- Caregiver with no memory problems
Exclusion
- Person subject to a measure of legal protection (curatorship, guardianship)
- Person with a legal guardian
- Adult unable to consent
- Patient non-inclusion criteria:
- Psychiatric, cognitive or neurological disorders making assessment impossible
- Patient suffering from another medical condition considered severe by the investigator and which may interfere with the consequences of IVF (for example, active cancers, motor disability of neurological origin, osteo-articular diseases inducing dependence...)
- Not likely to complete a self-administered questionnaire
- Caregiver non-inclusion criteria:
- Psychiatric, cognitive or neurological disorders making assessment impossible
- Not likely to complete a self-administered questionnaire
Key Trial Info
Start Date :
October 14 2019
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
December 15 2021
Estimated Enrollment :
151 Patients enrolled
Trial Details
Trial ID
NCT04031690
Start Date
October 14 2019
End Date
December 15 2021
Last Update
April 15 2022
Active Locations (1)
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1
CHU Dijon Bourgogne
Dijon, France