Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive lung disease associated with high mortality. The IPF journey affects patients’ and caregivers’ quality of life, this should be taken into account as an important parameter for a better disease management. An ethnographic study was conducted between December 2019 and January 2020 to explore social disease representations, patients‘ and cargivers’ experiences in the disease journey and consequences in their daily life, to identify the means of actions permitting a quality of life (QoL) improvement.

Twenty respondents, twelve patients aged 43 to 84 years old and eight caregivers in four French regions were met. Eleven patients were diagnosed with IPF between 2013 and 2017 and one patient in 1988 (at 12 years old). The lung function reported by patients ranged as follows: forced vital capacity from 112% to 40% and diffusing capacity of the lungs for carbon monoxide (DLCO) from 66% to <20%.

The survey included patients diagnosed at least three years ago. Collected data comprised disease representation, patients’/caregivers’ experience of the disease, healthcare journey, and consequences for their daily life. The first signs identified by the patient or their caregiver may not have been taken seriously by the primary care physician. The pre-diagnosis period was considered particularly traumatic for most patients. The biopsy performed in 8 cases was experienced as violent by 4/8 patients, some of whom still feel pain. Patients/caregivers knew how to define their disease and spontaneously gave severe representations of the disease such as "Rare, incurable disease", “an organ being destroyed”.

This study highlighted patients’/caregivers’ common needs at each stage of the disease. The lack of disease knowledge from frontline practitioners (general physicians, community pulmonologists) can lead to significant diagnostic error. Patients require psychological support and more information on daily aspects in disease management, such as food good practices and importance of physical activity, along with information about disease progression. The fear caused by these shortages can be reduced through contact with patients’ associations.

Numerous essential data were identified and should be considered for supporting actions that could allow to improve the QoL of patients with IPF.