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) and patient dependence. The factors involved in the alteration of QoL in these patients are the physical symptoms related to fibrosis (dyspnea, cough, fatigue) and psychological symptoms (anxiety and depression) as well as social, relational and financial factors, the experience of the disease and disability, the time required for diagnosis, the information received, and the initiation of a treatment such as oxygen therapy. Caregivers primarily in chronic diseases (so-called natural or informal caregivers) provide partial or total assistance to a dependent person for activities of daily living for care, social support and maintenance of autonomy, administrative procedures, psychological support, communication, domestic activities or even financial assistance, often despite their own exhaustion and health issues. Recent studies on the QoL of patient-caregiver dyads in IPF through semi-structured interviews highlight the role of previously identified factors in caregivers as well. Investigators want to confirm the data obtained in a large population of patients and their caregivers in order to evaluate the QoL of caregivers and confirm the impact of its various factors on it in order to suggest ways to improve the lives of both the caregiver and the patient. The hypothesis of investigators' work is that the QoL of caregivers of patients with IPF is altered, particularly by the patient's functional symptoms (cough, dyspnea, fatigue, anxiety and depression), the arrival of oxygen therapy in the home and the caregiver's social isolation. Investigators believe that there are links and interactions between the caregiver's and patient's quality of life and therefore have an impact on the patient's care.
Study Type
OBSERVATIONAL
Enrollment
151
Measurement of quality of life at D0, M6 and M12 via SF-36, CarGOQoL and the one-dimensional Zarit score
Quality of life measurement at D0, M6 and M12 via the SF-36
CHU Dijon Bourgogne
Dijon, France
The generic quality of life score SF-36 to measure caregivers' quality of life
Measurement of caregivers' quality of life via the generic quality of life score SF-36 in each of the 8 dimensions of the component
Time frame: Through study completion, an average of 12 months
The specific quality score CarGOQoL to measure caregivers' quality of life
Measurement of caregivers' quality of life via the specific quality score CarGOQoL in each of the 10 dimensions of the component
Time frame: Through study completion, an average of 12 months
"subjective burden" of caregivers
Measurement of the "subjective burden" of caregivers via the one-dimensional Zarit score
Time frame: Through study completion, an average of 12 months
Patients' Quality of life
Measurement of patients' quality of life via the generic quality of life score SF-36 in each of the 8 dimensions
Time frame: Through study completion, an average of 12 months
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