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      Patients' perspectives on COPD: findings from a social media listening study

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          Abstract

          We utilised social media listening (SML) to obtain patients' perspectives on symptoms, diagnosis and comorbidities associated with chronic obstructive pulmonary disease (COPD) and its impact on patients' quality of life (QoL).

          A comprehensive search on social media platforms was performed for English language content posted between July 2016 and January 2018 using COPD-related terms. Social Studio, a social media data aggregator tool, was used to capture relevant records. The content was manually curated to analyse and map psychological aspects with descriptive statistics applied on aggregated findings.

          A total of 849 posts from patients or caregivers (“patient insights”) were considered for the analysis, corresponding to postings of 695 unique individuals. Based on 734 mentions of symptoms from 849 posts by potential patients/caregivers, cough (27%), mucus (25%) and shortness of breath (21%) were the most frequent; analysis by perceived COPD severity indicated these to be common across all severities. Difficulty in mucus clearance (24% of 268 mentions) and sadness (40% of 129 mentions) were top among the aspects impacting physical and emotional QoL, respectively.

          SML from patients with COPD indicated that relief from cough, mucus production and shortness of breath would be the most desirable aspects of disease management from a patient's perspective.

          Abstract

          Cough, mucus and dyspnoea are the most frequently discussed symptoms on social media by patients with COPD http://ow.ly/WdnU30mZ7ZP

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          Most cited references30

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          Understanding the impact of symptoms on the burden of COPD

          Chronic obstructive pulmonary disease (COPD) imposes a substantial burden on individuals with the disease, which can include a range of symptoms (breathlessness, cough, sputum production, wheeze, chest tightness) of varying severities. We present an overview of the biomedical literature describing reported relationships between COPD symptoms and disease burden in terms of quality of life, health status, daily activities, physical activity, sleep, comorbid anxiety, and depression, as well as risk of exacerbations and disease prognosis. In addition, the substantial variability of COPD symptoms encountered (morning, daytime, and nighttime) is addressed and their implications for disease burden considered. The findings from this narrative review, which mainly focuses on real-world and observational studies, demonstrate the impact of COPD symptoms on the burden of disease and that improved recognition and understanding of their impact is central to alleviating this burden.
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            Social media use among patients and caregivers: a scoping review

            Objective To map the state of the existing literature evaluating the use of social media in patient and caregiver populations. Design Scoping review. Data sources Medline, CENTRAL, ERIC, PubMed, CINAHL Plus Full Text, Academic Search Complete, Alt Health Watch, Health Source, Communication and Mass Media Complete, Web of Knowledge and ProQuest (2000–2012). Study selection Studies reporting primary research on the use of social media (collaborative projects, blogs/microblogs, content communities, social networking sites, virtual worlds) by patients or caregivers. Data extraction Two reviewers screened studies for eligibility; one reviewer extracted data from relevant studies and a second performed verification for accuracy and completeness on a 10% sample. Data were analysed to describe which social media tools are being used, by whom, for what purpose and how they are being evaluated. Results Two hundred eighty-four studies were included. Discussion forums were highly prevalent and constitute 66.6% of the sample. Social networking sites (14.8%) and blogs/microblogs (14.1%) were the next most commonly used tools. The intended purpose of the tool was to facilitate self-care in 77.1% of studies. While there were clusters of studies that focused on similar conditions (eg, lifestyle/weight loss (12.7%), cancer (11.3%)), there were no patterns in the objectives or tools used. A large proportion of the studies were descriptive (42.3%); however, there were also 48 (16.9%) randomised controlled trials (RCTs). Among the RCTs, 35.4% reported statistically significant results favouring the social media intervention being evaluated; however, 72.9% presented positive conclusions regarding the use of social media. Conclusions There is an extensive body of literature examining the use of social media in patient and caregiver populations. Much of this work is descriptive; however, with such widespread use, evaluations of effectiveness are required. In studies that have examined effectiveness, positive conclusions are often reported, despite non-significant findings.
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              Palliative care and management of troublesome symptoms for people with chronic obstructive pulmonary disease

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                Author and article information

                Journal
                ERJ Open Res
                ERJ Open Res
                ERJOR
                erjor
                ERJ Open Research
                European Respiratory Society
                2312-0541
                February 2019
                11 February 2019
                : 5
                : 1
                : 00128-2018
                Affiliations
                [1 ]Novartis Pharma AG, Basel, Switzerland
                [2 ]Novartis Healthcare Pvt Ltd, Hyderabad, India
                Author notes
                Nigel Cook, Decision Support & Insights, Global Patient Access WSJ-210.15.30.14, Novartis Pharma AG, 4056 Basel, Switzerland. E-mail: nigel.cook@ 123456novartis.com
                Author information
                https://orcid.org/0000-0001-7754-5744
                Article
                00128-2018
                10.1183/23120541.00128-2018
                6368996
                6b6e8e58-3e84-4f42-a975-742db3459e36
                Copyright ©ERS 2019

                This article is open access and distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0.

                History
                : 06 August 2018
                : 21 November 2018
                Funding
                Funded by: This study was sponsored by Novartis Pharma AG. http://doi.org/
                Categories
                Original Articles
                COPD
                1

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