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Eating and drinking experience in patients with idiopathic pulmonary fibrosis: a qualitative study

Lookup NU author(s): Professor Christopher WardORCiD, Dr Ian Forrest



This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).


© 2024 BMJ Publishing Group. All rights reserved.Objective To explore eating and drinking experiences of patients with idiopathic pulmonary fibrosis (IPF), the impact of any changes associated with their diagnosis and any coping mechanisms developed by patients. Setting Pulmonary fibrosis support groups around the UK and the regional Interstitial Lung Diseases Clinic, Newcastle upon Tyne. Participants 15 patients with IPF (9 men, 6 women), median age 71 years, range (54–92) years, were interviewed. Inclusion criteria included competent adults (over the age of 18 years) with a secure diagnosis of IPF as defined by international consensus guidelines. Patients were required to have sufficient English language competence to consent and participate in an interview. Exclusion criteria were a history of other lung diseases, a history of pre-existing swallowing problem of other causes that may be associated with dysphagia and individuals with significant communication or other memory difficulties that render them unable to participate in an interview. Design A qualitative study based on semistructured interviews used purpose sampling conducted between February 2021 and November 2021. Interviews were conducted via video videoconferencing call platform or telephone call, transcribed and data coded and analysed using a reflexive thematic analysis. Results Three main themes were identified, along with several subthemes, which were: (1) Eating, as such, is no longer a pleasure. This theme mainly focused on the physical and sensory changes associated with eating and drinking and their effects and the subsequent emotional and social impact of these changes; (2) It is something that happens naturally and just try and get on with it. This theme centred on the self-determined strategies employed to manage changes to eating and drinking; and (3) What is normal. This theme focused on patients seeking information to better understand the changes in their eating and drinking and the patients’ beliefs about what has changed their eating and drinking. Conclusions To our knowledge, this is the first study to report on IPF patients’ lived experience of eating and drinking changes associated with their diagnosis. Findings demonstrate that some patients have substantial struggles and challenges with eating and drinking, affecting them physically, emotionally and socially. There is a need to provide better patient information for this area and further study.

Publication metadata

Author(s): Alamer AA, Ward C, Forrest I, Drinnan M, Patterson J

Publication type: Article

Publication status: Published

Journal: BMJ Open

Year: 2024

Volume: 14

Issue: 4

Online publication date: 05/04/2024

Acceptance date: 11/03/2024

Date deposited: 18/04/2024

ISSN (electronic): 2044-6055

Publisher: BMJ Publishing Group


DOI: 10.1136/bmjopen-2023-078608

PubMed id: 38582536


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