Differences in Patients and Physician Viewpoints of the Management of Idiopathic Pulmonary Fibrosis (IPF)

Rationale:

A majority of patients with IPF do not receive approved antifibrotic therapy with either pirfenidone or nintedanib. This analysis aimed to understand different patients' viewpoints of IPF care and treatment, and the attitude of physicians with a 'watch and wait' approach (WWP, initiate antifibrotic > 4 months post-diagnosis in ≥50% of patients) or a proactive approach (PP, mostly initiate antifibrotic < 4 months post-diagnosis).

Methods:

Patients with IPF and physicians (both WWP and PP) who adviced > 5 patients with IPF within 3 months and initiated IPF treatment were recruited for a 20 minute online survey.

Results:

Overall, 43 patients and 254 physicians from 5 European countries and Canada were surveyed between Sep and Oct 2016. Only 56% of patients felt to be sufficiently informed at diagnosis: 58% were advised that IPF is progressive; 44% and 49% discussed prognosis and treatment options, respectively. Although the majority of patients (93%) preferred to receive advice from their physician, most patients sought further information on IPF (86%), treatment (81%), and/or prognosis (76%). Most patients (86%) stated that an antifibrotic treatment to slow IPF progression was more important than side-effect profiles. Overall, 86% of patients receiving antifibrotic therapy felt confident in managing side effects. At diagnosis, WWP were less likely to discuss IPF prognosis than PP, even upon patients' query. 62% and 38% of patients with 'mild' IPF (severity defined by physician) were treated with an antifibrotic < 4 months post-diagnosis by PP and WWP, respectively; with varying reasons for not treating. WWP were more concerned about treatment side effects than PP (28% vs. 17%, respectively), while PP worried more about disease progression than WWP (83% vs. 72%, respectively).

Tab. 1:

Differences between physicians regarding disease prognosis and treatment decisions

	WWP N = 118	PP N = 136
Mention typical EPF prognosis at diagnosis	47%	59%
Will avoid discussing typical prognosis life expectancy even when patient asks	51%	33%*
Comfortable discussing IPF prognosis	21%	34%*
Strongly believe they can make a big difference in IPF patients' lives post-diagnosis	29%	45%*
Agree that antifibrotic therapies significantly slow the progression of EPF	36%	51%*
Reasons for not treating patients with 'mild' IPF with an antifibrotic:
Patient is asymptomatic/has few symptoms	66%	36%*
Patient has stable disease	65%	33%*
Patient has good lung function	58%	38%*
Patient has a good quality of life	53%	27%*
Patient has IPF that is progressing slowly	53%	26%*
*p < 0.05 for PP vs. WWP.

Conclusions:

This analysis identified a disparity between the information patients want at diagnosis and the information they gain from their physicians. Furthermore, survey results suggest that PP may be more confident with the benefit-risk profile of antifibrotic treatment than WWP. A belief in effective treatment options may ease the complex conversation with patients regarding the severity of an IPF diagnosis, enabling them to make informed treatment decisions.

Funding:

This analysis was sponsored by F. Hoffmann-La Roche Ltd.