In a new study, researchers described the insights and perspectives of patients and caregivers regarding the clinical progression of idiopathic pulmonary fibrosis (IPF), and the needs of both at different disease stages. Their article, titled “The care needs of patients with idiopathic pulmonary fibrosis and their carers (CaNoPy): results of a qualitative study,” was published online at BMC Pulmonary Medicine.
IPF is a chronic interstitial lung disease affecting the tissue that supports the alveoli in the lungs, characterized by the inflammation or accumulation of scar tissue (denominated fibrosis) and leading to progressive loss of elasticity, failure of proper lung activity, and insufficient oxygenation of the blood and organs. The disease is of unknown origin, with no cure and a median survival of three to five years after diagnosis. IPF clinical course and progression is highly variable among patients, and the trajectory and rate of decline are difficult to predict at diagnosis.
Research has mostly focused on disease modification, as measured by respiratory function tests, with limited knowledge about the impact of IPF on the patient’s daily life and the clinical caregiver’s experience. Furthermore, information regarding communication, the need for supportive and palliative interventions, and the identification of disease triggers is also limited.
For the present study (CaNoPy), researchers recruited 27 IPF patients at four different stages of disease, and conducted 48 semi-structured interviews with these patients and 21 paired caregivers. The study identified key elements in IPF care, such as clinical consultation focus, timely identification of changes in health status and functional activity, understanding symptoms and medical interventions, and the caregiver role.
Results from a qualitative analysis of the interviews showed that patients feel they received insufficient clinical and practical information for the management of their disease. Furthermore, patients would have welcomed more advice in deciding on specific interventions and navigating the uncertainty of their prognosis. IPF’s impact on the daily life was found to vary accordingly to the disease stage.
The study also identified three areas for improved communication: “to use the opportunity of clinical encounters to focus on supportive interventions and encourage aspects of self-management; to recognise carers as important participants in the consultation; and finally, to appreciate that patients and carers differ in their needs for information and that these needs change over time.”
Researchers highlighted that clinical consultations focusing on disease measures such as lung function are disconnected from the patient’s experiences and everyday life concerns. Caregivers expressed ambiguity in how they were perceived, defending the need for clinicians to look at them as active participants in the patient’s disease pathway instead of passive observers. Oxygen therapy was identified as a key care support, improving the quality of life.
The research team concluded, “this study highlights the importance of timing: identifying turning points more quickly in order to trigger timely assessment and intervention to improve patient and carer outcomes. Taken together our findings have important implications for the structure and function of IPF Clinics, multidisciplinary teams and associated clinical pathways.”