Health and Quality of Life Assessment Project for Caregivers of Idiopathic Pulmonary Fibrosis Patients

  • End date
    Oct 25, 2022
  • participants needed
  • sponsor
    Centre Hospitalier Universitaire Dijon
Updated on 25 January 2021
idiopathic pulmonary fibrosis


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.

Condition Pulmonary Fibrosis, Pulmonary Fibrosis, Idiopathic Pulmonary Fibrosis, Idiopathic Pulmonary Fibrosis, Patient-caregiver Dyads, Patient-caregiver Dyads, Patient-caregiver Dyads, usual interstitial pneumonia, Patient-caregiver Dyads
Treatment Caregiver Quality of Life Questionnaires, Patient Quality of Life Questionnaires
Clinical Study IdentifierNCT04031690
SponsorCentre Hospitalier Universitaire Dijon
Last Modified on25 January 2021


Yes No Not Sure

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

Exclusion Criteria

Person subject to a measure of legal protection (curatorship, guardianship)
Person with a legal guardian
Adult unable to consent
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