Diffuse Lung Disease: Evaluation and Treatment of ILD |

Using Health Social Network Sourced Data to Characterize Idiopathic Pulmonary Fibrosis Patients FREE TO VIEW

Nadine Drees, MS; York Z öllner, PhD; Dorothee Bartels, PhD
Author and Funding Information

Boehringer Ingelheim GmbH, Ingelheim, Germany

Copyright 2016, American College of Chest Physicians. All Rights Reserved.

Chest. 2016;150(4_S):481A. doi:10.1016/j.chest.2016.08.495
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SESSION TITLE: Evaluation and Treatment of ILD

SESSION TYPE: Original Investigation Poster

PRESENTED ON: Wednesday, October 26, 2016 at 01:30 PM - 02:30 PM

PURPOSE: PatientsLikeMe® (PLM) holds one of the largest global online communities for idiopathic pulmonary fibrosis (IPF), with 1925 patients in April 2014. Within this health social network, patients share their disease experiences through structured surveys or unstructured forums. The suitability of these IPF data as source for research has not been extensively evaluated. The objectives were to evaluate baseline characteristics of the PLM IPF cohort, and to assess if and how this population differs from IPF populations described in observational studies.

METHODS: This study had three components: (1) descriptive analysis of the PLM IPF data, (2) systematic literature review of observational studies assessing characteristics of IPF patients (2005-2015), (3) descriptive comparative assessment of the results.

RESULTS: Mean age (64.4 years, SD 11.8) and sex distribution (53.7% male) of the PLM IPF population were within the range of those characterized within 40 observational studies (61.7-79.4 years, 43%-79% male). Large differences were observed in the majority of prevalences of comorbidities, symptoms and treatments between the PLM cohort and observational studies, e.g. for gastro-esophageal reflux, cough and corticosteroid use with 1.1% vs. 7.2%-68.2%, 24.0% vs. 46.6%-84.3%, and 4.1% vs. 12.8%-49.0%, respectively.

CONCLUSIONS: IPF patients from PLM differ in important characteristics compared to those described in existing literature.

CLINICAL IMPLICATIONS: PLM could provide a valuable source for getting deeper insights on IPF from the patient perspective. Further research is needed to evaluate potential selection effects and understand how data capture methods may be improved to enhance and focus research efforts into this rare disease.

DISCLOSURE: Nadine Drees: Employee: Nadine Drees is an employee of Boehringer Ingelheim GmbH Dorothee Bartels: Employee: Dorothee Bartels is an employee of Boehringer Ingelheim GmbH The following authors have nothing to disclose: York Z öllner

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