Living With IPF:A Patients’ Perspective

Title: Living With IPF:A Patients’ Perspective
Author(s): A Sarfaraz, A Subramanian, SC Donnelly, C Varghese, H Rahman
Institution: Department of Medicine, Tallaght University Hospital, Trinity College Dublin
Poster: Click to view poster
Category: Lung Cancer/CF/ILD/Surgery
A Sarfaraz, A Subramanian, SC Donnelly, C Varghese, H Rahman
Department of Medicine, Tallaght University Hospital, Trinity College Dublin

Idiopathic pulmonary fibrosis (IPF) is a progressive and ultimately fatal disease which has a major impact on patients' quality of life (QOL). Except for lung transplantation, there is no curative treatment option. There are 2 disease-modifying drugs that slow down disease decline.Pirfenidone and Nintedanib. We aimed to study patients’ perspective about IPF and anti-fibrotics with reference to IPF-related information available, ease of access, anti-fibrotic experience and role of IPF specialist nurses.
This study had a qualitative descriptive design. We selected a cohort of 30 patients with IPF who were on antifibrotics (73% on Pirfenidone,27% on Nintedanib) followed in a single Irish tertiary University Hospital.20 minute telephonic interviews were conducted and structured patient outcomes were obtained using a 25-point questionnaire with 5 domains assessing patients’ understanding of the disease, HRQOL in IPF, antifibrotics experience and side effects profile, patient/carer support from IPF specialist nurses and psychosocial aspects of the disease.
We used the Framework method for qualitative analysis. Key outcomes were that the patients were challenged by having an “unknown” (n=12) and “invisible” (n=9) disease.Patient experiences and satisfaction with antifibrotic treatment were fairly positive, and similar for Nintedanib and pirfenidone. Self-reported experiences with the effectiveness of the medication (e.g. positive impact on physical health, daily activities) was the main factor associated with overall medication satisfaction. HADS Depression and Anxiety score was slightly higher in Pirfenidone users (3.9) than in Nintedanib users (3.0). 90% of patients reported that an ILD specialist nurse was their main clinical contact for IPF healthcare
In conclusion, our study provides an overview of the most used patient-reported outcome measures in IPF to facilitate choices for both researchers and clinicians when incorporating the patient voice in their research and care. To enhance truly personalized treatment in IPF, biology should be combined with patient perspectives.