Patients with idiopathic pulmonary fibrosis (IPF) experience “substantial struggles” with eating and drinking, with direct physical, emotional and social consequences, UK researchers have reported.

A small qualitative study, which for the first time explored IPF patients’ lived experiences with eating and drinking, revealed a range of problems driving a “profound shift” in patients’ relationship with food and a need for more information to understand these changes better, according to a paper published in BMJ Open (link here).

The authors highlighted that a key theme that emerged from the research was that for patients with IPF, eating was no longer a pleasure because of the effects of physical and sensory issues and the subsequent emotional and social ramifications.

Patients reported breathlessness when eating and drinking, which triggered adjustments in both the pace and frequency of swallowing. The prolonged duration of meals impacted daily routines.

According to the paper, challenges with food and saliva inhalation were also cited, leading to coughing and discomfort.

General fatigue and exhaustion during and after eating were also common, and patients living alone reported sometimes skipping meals.

Persistent mouth dryness, night-time thirst, changes in taste and smell, a metallic taste potentially linked to antifibrotics, and weight loss were also highlighted by patients as significant concerns.

Patients also reported a range of negative emotions linked to eating and drinking, most commonly a fear of choking, as well as “frustration, embarrassment and a sense of diminished enjoyment”.

“The study indicates that patients with IPF face physical, social and emotional consequences due to the changes in their eating and drinking abilities, which can significantly impact their overall quality of life,” the authors concluded.

“This study’s findings emphasise the importance of educating patients and healthcare providers about the eating and drinking changes that may occur in IPF disease.

“Such education could increase awareness of potential challenges in eating and drinking and might ultimately help to reduce the risk of additional health problems resulting from exacerbation of the disease,” they stressed.