Study: People With PF Prefer “Blended” Patient Education Approach

People with pulmonary fibrosis (PF) consider health care professionals their most important source of information on the disease, according to a new report, but they also rely on the internet and digital resources for sensitive topics or when their time with their provider is limited.

Those are among the key findings of a new study that aimed to better understand how patients obtain information about their disease. The study was based on interviews with people with PF and was published in BMJ Open Respiratory Research.¹

Corresponding author Thomas F. Riegler, MS, of the Zurich University of Applied Sciences, and colleagues, said the life-altering nature of PF means that patient education and self-management (PESM) information is critically important for patient empowerment and disease-management. However, the task is complicated by the wide availability of incomplete or inaccurate information on the internet. A 2016 report, for instance, found that nearly half (48%) of a sampling of websites with information about idiopathic PF (IPF) described potential therapies that were either not indicated for the disease or were harmful.² Three years later, a similar analysis of YouTube videos about IPF found 17% of videos contained inaccurate therapeutic recommendations; it also found that such videos had higher viewership and engagement scores.³

Riegler and colleagues wanted to better understand how patients with PF get information about their disease and also to identify specific gaps in care and information. Their goal was to help providers and caregivers to refine their PESM programming.

The team conducted interviews with 11 people with PF, 10 of whom were male and 1 of whom was female. The median age of the group was 73 years, and the time since diagnosis within the cohort ranged from 1 to 10 years. The interviews, which lasted between 40 minutes and 70 minutes, touched on a range of categories, including staying well, keeping fit, and managing specific symptoms.

All of the participants told their interviewers that their health care providers were their most important source of information, adding that it was important for their family members to be included in communication about their disease. The patients said they were aware of important safety recommendations, including preventing infections by getting vaccinations and wearing facemasks during flu season. However, some of the participants told their interviewers that they lacked sufficient knowledge about their disease to explain it to others.

Riegler and colleagues said most patients’ primary concern upon learning of their diagnosis was to understand whether the disease is fatal and how it might affect their life expectancy. Many patients, though, said their health care providers either did not address the issue or did not provide a satisfactory level of detail.

“Consequently, these patients turned to the internet for answers and/or became preoccupied with these thoughts,” Riegler and colleagues wrote. Many who went online became distressed about the fear of dying from suffocation due to breathlessness. However, the authors said learning that morphine could help ease discomfort in the dying process helped allay that distress.

The investigators also found that patients needed more guidance managing antifibrotic side effects, such as by adapting their nutrition. They also had insufficient self-management strategies for cough and fatigue, the authors found. Asked about exercise, the participants understood its value, but reported a lack of structure in their at-home workouts.

Reigler and colleagues said their interviews showed the importance of regular interaction with health care providers, but they said patients also wanted to use digital resources to learn about and manage their disease. The investigators said these PESM strategies can work in tandem.

“By using a tailored blended learning approach, people with PF could prepare before in-person or digital meetings with HCPs (healthcare providers) to refine their self-management plans and address their specific questions,” the authors said.

References:

1. Riegler TF, Marcin T, Wirz M, et al. Living with pulmonary fibrosis: how affected people experience disease-related information, health services and self-management strategies. BMJ Open Respir Res. 2025;12(1):e003303. doi:10.1136/bmjresp-2025-003303
2. Fisher JH, O'Connor D, Flexman AM, Shapera S, Ryerson CJ. Accuracy and Reliability of Internet Resources for Information on Idiopathic Pulmonary Fibrosis. Am J Respir Crit Care Med. 2016;194(2):218-225. doi:10.1164/rccm.201512-2393OC
3. Goobie GC, Guler SA, Johannson KA, Fisher JH, Ryerson CJ. YouTube Videos as a Source of Misinformation on Idiopathic Pulmonary Fibrosis. Ann Am Thorac Soc. 2019;16(5):572-579. doi:10.1513/AnnalsATS.201809-644OC