Evidence map›Paper›PMID 37560148›Full record

ArticlePatient preference and adherence2023

I-PreFer Study: A Questionnaire to Explore Patient, Caregiver and Pulmonologist Preferences of Idiopathic Pulmonary Fibrosis Treatment Options.

Maria Hollmen, Tom Bromilow, Adam B Smith, Stuart Mealing, Damian Lewis, Liam Galvin, Steve Jones, Luís Pacheco, Stéphane Soulard, Antoine Froidure

Abstract read
In one paragraph

Article in Patient preference and adherence, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Maria HollmenFaculty of Medicine, University of Helsinki, Helsinki, Finland.
Tom BromilowYork Health Economics Consortium (YHEC), York, UK.ORCID 0000-0003-2494-5685
Adam B SmithYork Health Economics Consortium (YHEC), York, UK.
Stuart MealingYork Health Economics Consortium (YHEC), York, UK.ORCID 0000-0002-2564-1440
Damian LewisYork Health Economics Consortium (YHEC), York, UK.ORCID 0000-0002-1803-0764
Liam GalvinEuropean Pulmonary Fibrosis & Related Disorders Federation, Overijse, Belgium.
Steve JonesEuropean Pulmonary Fibrosis & Related Disorders Federation, Overijse, Belgium.
Luís PachecoBoehringer Ingelheim, Amsterdam, the Netherlands.
Stéphane SoulardBoehringer Ingelheim, Amsterdam, the Netherlands.
Antoine FroidureService de Pneumologie, Cliniques Universitaires Saint-Luc, Brussels, Belgium.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Introduction: Idiopathic Pulmonary Fibrosis (IPF) is a rare disease that causes shortness of breath, dry cough, and tiredness. While there is no cure for IPF, current therapeutic treatments aim to slow lung degeneration while managing side effects. There is little known about patient experience and attitude with regards to their disease and medication. Purpose: To understand the perceptions, behaviors and drivers of treatment decision-making among patients, caregivers and pulmonologists in IPF. Patients and Methods: Online surveys to patients with IPF, caregivers and pulmonologists were developed and administered in Belgium, Finland, France, Greece (pulmonologists only), the Netherlands, Ireland and the United Kingdom between November 2021 and January 2022. Results: A total of 111 patients, 22 caregivers and 140 pulmonologists participated. Half (47%) of patients rated their disease as "severe", while pulmonologists reported that a quarter of their patients had a low Forced Vital Capacity (FVC) (below 50% of the predicted value). Between 21% and 42% of the patients do not take an IPF medication (patients' perception) or antifibrotic (physicians' perception). Pulmonologists reported that a total of 58% of their patients were receiving antifibrotic medication, any IPF medication, while around 53%, 55%, 35% and 73% of the patients limited their exposure (sometimes or often) to the sun due to IPF, considered taking medication against diarrhea, nausea/vomiting and heartburn, respectively. Treatment adherence was relatively high (81%), in line with the caregivers' view and the pulmonologists' expectations. Overall, cultural, clinical or socio-demographic factors impacted patients' perceptions or behaviors. Conclusion: This study shows there is a significant proportion of IPF patients who remain untreated, a misalignment of disease severity between patients and their physicians and patient background impacts behavior. Overall, more in-depth patient-physician communication is needed to improve treatment experience.

Indexed as

adherenceantifibroticbehaviorlung diseaseonline surveyoutcomes research

Identifiers

PMID37560148
PMCPMC10408661

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.