Social Media Content of Idiopathic Pulmonary Fibrosis Groups and Pages on Facebook: Cross-sectional Analysis.

BACKGROUND Patients use Facebook as a resource for medical information. We analyzed posts on idiopathic pulmonary fibrosis (IPF)-related Facebook groups and pages for the presence of guideline content, user engagement, and usefulness. OBJECTIVE The objective of this study was to describe and analyze posts from Facebook groups and pages that primarily focus on IPF-related content. METHODS Cross-sectional analysis was performed on a single date, identifying Facebook groups and pages resulting from separately searching "IPF" and "idiopathic pulmonary fibrosis." For inclusion, groups and pages needed to meet either search term and be in English, publicly available, and relevant to IPF. Every 10th post was assessed for general characteristics, source, focus, and user engagement metrics. Posts were analyzed for presence of IPF guideline content, useful scientific information (eg, scientific publications), useful support information (eg, information about support groups), and potentially harmful information. RESULTS Eligibility criteria were met by 12 groups and 27 pages, leading to analysis of 523 posts. Of these, 42% contained guideline content, 24% provided useful support, 20% provided useful scientific information, and 5% contained potentially harmful information. The most common post source was nonmedical users (85%). Posts most frequently focused on IPF-related news (29%). Posts containing any guideline content had fewer likes or comments and a higher likelihood of containing potentially harmful content. Posts containing useful supportive information had more likes, shares, and comments. CONCLUSIONS Facebook contains useful information about IPF, but posts with misinformation and less guideline content have higher user engagement, making them more visible. Identifying ways to help patients with IPF discriminate between useful and harmful information on Facebook and other social media platforms is an important task for health care professionals

Environmental impacts on clinical outcomes and the epigenome in patients with fibrotic interstitial lung disease

Fibrotic interstitial lung diseases (fILDs) are a group of conditions characterized by lung scarring, functional limitation, and a high morbidity and mortality. Air pollution and socioeconomic disadvantage have been linked with adverse outcomes in idiopathic pulmonary fibrosis (IPF), the most common form of fILD, but these impacts have not been evaluated in large, geographically-diverse cohorts of patients with fILD. This dissertation sought to evaluate the impact of particulate matter with a diameter of <=2.5um (PM2.5) and neighborhood-level disadvantage on clinical outcomes, genomic, and epigenomic mechanisms of disease in a diverse cohort of patients with fILD. Aim 1 demonstrated that patients with fILD who live in neighborhoods with greater disadvantage in the U.S., but not Canadian cohort, experience increased mortality and lower odds of receiving lung transplant. This work highlights how health disparities may be exacerbated by healthcare system structure, and raises questions of how environmental factors in disadvantaged neighborhoods contribute to these adverse outcomes. Aim 2 demonstrated that increased exposures to PM2.5 and its anthropogenic constituents (particularly sulfate, nitrate, and ammonium) are associated with increased mortality and worse lung function in fILDs. Aim 3 demonstrated that PM2.5 and its constituents can influence DNA methylation (DNAm) patterns and telomere length in patients with fILD, and that these molecular changes may mediate PM2.5-mortality associations. We found that increased PM2.5, sulfate, and ammonium exposures were associated with higher global DNAm using an ELISA-based assay. Then, epigenome-wide association studies identified multiple CpGs associated with high exposures to PM2.5. Most significant CpGs were found in analyses of sulfate, ammonium, and sea salt PM2.5 constituents, highlighting the potentially greater mechanistic relevance for these components of the PM2.5 mixture. Lastly, we found that higher exposure to PM2.5 and anthropogenic constituents was associated with shorter telomere length, which mediates a portion of the PM2.5-mortality association. By highlighting environmental impacts on clinical outcomes and molecular mechanisms of disease, we have unveiled potential causal pathways for how such exposures contribute to the development and progression of fILDs. This research has direct impacts on public health by providing critical data to inform environmental health policies that protect vulnerable populations

YouTube-videos for patient education in lymphangioleiomyomatosis?

Background The Internet is commonly used by patients to acquire health information. To date, no studies have evaluated the quality of information available on YouTube regarding lymphangioleiomyomatosis (LAM). Our aim was to determine the quality and content of YouTube videos regarding LAM and to compare the information provided with current knowledge and guidelines about the disease. Methods The first 200 video hits on YouTube in English for the search term “lymphangioleiomyomatosis” were recorded. All videos suitable for patient education on LAM were included. Video quality was analyzed independently by two investigators utilizing the Health on the Net (HONcode) score, which assesses whether websites provide understandable, accessible, and trustworthy health information; the DISCERN score, which evaluates the quality of information about treatment decisions; and a newly developed LAM-related content score (LRCS) with 31 guideline elements. Results The search identified 64 eligible videos. The “engagement rate” of 0.3 was low, with a median number of views of 408 (range 42–73,943), a median of 4 likes (range 0–2082), and the majority (53%) receiving a low HONcode score (≤ 2) and only 10% of videos achieving a high score (> 5). The median DISCERN score was 28 (range 15–61, maximum possible score 80), indicating poor video quality and reliability. The median LRCS was 8 (range 0–29, maximum possible score 31) and videos frequently failed to provide sources of information. Conclusions Online resources could contribute to the limited and often inaccurate information available to patients with LAM, with only a few YouTube videos providing high-quality patient-relevant information.Medicine, Faculty ofNon UBCMedicine, Department ofReviewedFacultyResearche

YouTube Videos as a Source of Misinformation on Idiopathic Pulmonary Fibrosis.

Rationale: Patients frequently use YouTube as a platform for dissemination and consumption of health information. Caregivers and patients affected by idiopathic pulmonary fibrosis (IPF) are likely consumers of this information. Objectives: We aimed to determine viewer engagement, quality, and content of YouTube videos on IPF and to compare the provided information with contemporaneous guidelines. Methods: We analyzed the first 200 YouTube videos resulting from the search term "idiopathic pulmonary fibrosis." Patient-directed videos containing any information on IPF were eligible. Each video was evaluated for content related to IPF features and treatments that are discussed in clinical practice guidelines, as well as nonrecommended treatments. Video quality was assessed using an adapted Health on the Net Foundation Code of Conduct (HONCode) scoring instrument and the validated DISCERN instrument (a questionnaire that evaluates the quality of consumer health information). Details of the video source and viewer engagement metrics were recorded for each video. Results: A total of 102 videos met eligibility criteria. No videos assessed all content topics, with videos addressing a median of 17% of all potential content items that were highlighted in clinical practice guidelines. Content scores were higher in videos produced by foundations and medical organizations, news/media organizations, and independent medical professionals compared with videos produced by industry, for-profit organizations, and independent nonmedical users. Nonrecommended and/or potentially harmful therapies were described as valid and potentially beneficial treatments for IPF in 17% of videos, with higher viewership and engagement metrics for these videos. HONCode and DISCERN scores that assessed for video reliability, credibility, and quality of information, were poor for all video source types but were lower in videos posted by industry/for profit organizations and independent nonmedical users. Conclusions: Patient-directed YouTube videos on IPF frequently provide incomplete and inaccurate information. Videos supporting the use of nonrecommended therapies have higher viewing numbers and user engagement, highlighting the potential risks of using YouTube as a resource for health information. Physicians, professional organizations, and patient support organizations should be aware that YouTube is frequently used by patients. Developing a tool similar to HONCode that applies to YouTube videos would improve the ability to critically and rapidly appraise the quality of online video-disseminated information on IPF

The clinical frailty scale for risk stratification in patients with fibrotic interstitial lung disease.

BACKGROUND Previous studies have shown the importance of frailty in patients with fibrotic interstitial lung disease (ILD). RESEARCH QUESTION Is the Clinical Frailty Scale (CFS) a valid tool to improve risk stratification in patients with fibrotic ILD? STUDY DESIGN AND METHODS Patients with fibrotic ILD were included from the prospective multicenter Canadian Registry for Pulmonary Fibrosis. The CFS was assessed using available information from initial ILD clinic visits. Patients were stratified into fit (CFS 1-3), vulnerable (CFS 4), and frail (CFS 5-9) subgroups. Cox proportional hazards and logistic regression models with mixed effects were used to estimate time to death or lung transplantation. A derivation and validation cohort were used to establish prognostic performance. Trajectories of functional tests were compared using joint models. RESULTS Of the 1587 patients with fibrotic ILD, 858 (54%) were fit, 400 (25%) vulnerable and 329 (21%) frail. Frailty was a risk factor for early mortality (HR 5.58, 95%CI 3.64-5.76, p<0.001) in the entire cohort, in individual ILD diagnoses, and after adjustment for potential confounders. Adding frailty to established risk prediction parameters improved the prognostic performance in derivation and validation cohorts. Frail patients had larger annual declines in forced vital capacity (FVC) %-predicted compared to fit patients (-2.32 (95%CI -3.39 to -1.17) vs. -1.55 (95%CI -2.04 to -1.15); p=0.02, respectively). INTERPRETATION The simple and practical CFS is associated with pulmonary and physical function decline in patients with fibrotic ILD and provides additional prognostic accuracy in clinical practice

Neighbourhood disadvantage impacts on pulmonary function in patients with sarcoidosis

Background This multicentre, international, prospective cohort study evaluated whether patients with pulmonary sarcoidosis living in neighbourhoods with greater material and social disadvantage experience worse clinical outcomes. Methods The area deprivation index and the Canadian Index of Multiple Deprivation evaluate neighbourhood-level disadvantage in the US and Canada, with higher scores reflecting greater disadvantage. Multivariable linear regression evaluated associations of disadvantage with baseline forced vital capacity (FVC) or diffusing capacity of the lung for carbon monoxide (DLCO) and linear mixed effects models for associations with rate of FVC or DLCO decline, and competing hazards models were used for survival analyses in the US cohort, evaluating competing outcomes of death or lung transplantation. Adjustments were made for age at diagnosis, sex, race and smoking history. Results We included 477 US and 122 Canadian patients with sarcoidosis. Higher disadvantage was not associated with survival or baseline FVC. The highest disadvantage quartile was associated with lower baseline DLCO in the US cohort (β = −6.80, 95% CI −13.16 to −0.44, p=0.04), with similar findings in the Canadian cohort (β = −7.47, 95% CI −20.28 to 5.33, p=0.25); with more rapid decline in FVC and DLCO in the US cohort (FVC β = −0.40, 95% CI −0.70 to −0.11, p=0.007; DLCO β = −0.59, 95% CI −0.95 to −0.23, p=0.001); and with more rapid FVC decline in the Canadian cohort (FVC β = −0.80, 95% CI −1.37 to −0.24, p=0.003). Conclusion Patients with sarcoidosis living in high disadvantage neighbourhoods experience worse baseline lung function and more rapid lung function decline, highlighting the need for better understanding of how neighbourhood-level factors impact individual patient outcomes