Dataset Information

Social Media Listening to Understand the Lived Experience of Presbyopia: Systematic Search and Content Analysis Study.

ABSTRACT: BACKGROUND:Presbyopia is defined as the age-related deterioration of near vision over time which is experienced in over 80% of people aged 40 years or older. Individuals with presbyopia have difficulty with tasks that rely on near vision. It is not currently possible to stop or reverse the aging process that causes presbyopia; generally, it is corrected with glasses, contact lenses, surgery, or the use of a magnifying glass. OBJECTIVE:This study aimed to explore how individuals used social media to describe their experience of presbyopia with regard to the symptoms experienced and the impacts of presbyopia on their quality of life. METHODS:Social media sources including Twitter, forums, blogs, and news outlets were searched using a predefined search string relating to symptoms and impacts of presbyopia. The data that were downloaded, based on the keywords, underwent manual review to identify relevant data points. Relevant posts were further manually analyzed through a process of data tagging, categorization, and clustering. Key themes relating to symptoms, impacts, treatment, and lived experiences were identified. RESULTS:A total of 4456 social media posts related to presbyopia were identified between May 2017 and August 2017. Using a random sampling methodology, we selected 2229 (50.0%) posts for manual review, with 1470 (65.9%) of these 2229 posts identified as relevant to the study objectives. Twitter was the most commonly used channel for discussions on presbyopia compared to forums and blogs. The majority of relevant posts originated in Spain (559/1470, 38.0%) and the United States (426/1470, 29.0%). Of the relevant posts, 270/1470 (18.4%) were categorized as posts written by individuals who have presbyopia, of which 37 of the 270 posts (13.7%) discussed symptoms. On social media, individuals with presbyopia most frequently reported experiencing difficulty reading small print (24/37, 64.9%), difficulty focusing on near objects (15/37, 40.5%), eye strain (12/37, 32.4%), headaches (9/37, 24.3%), and blurred vision (8/37, 21.6%). 81 of the 270 posts (30.0%) discussed impacts of presbyopia-emotional burden (57/81, 70.4%), functional or daily living impacts (46/81, 56.8%), such as difficulty reading (46/81, 56.8%) and using electronic devices (21/81, 25.9%), and impacts on work (3/81, 3.7%). CONCLUSIONS:Findings from this social media listening study provided insight into how people with presbyopia discuss their condition online and highlight the impact of presbyopia on individuals' quality of life. The social media listening methodology can be used to generate insights into the lived experience of a condition, but it is recommended that this research be combined with prospective qualitative research for added rigor and for confirmation of the relevance of the findings.

SUBMITTER: Wolffsohn JS

PROVIDER: S-EPMC7536603 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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Social Media Listening to Understand the Lived Experience of Presbyopia: Systematic Search and Content Analysis Study.

Wolffsohn James S JS Leteneux-Pantais Claudia C Chiva-Razavi Sima S Bentley Sarah S Johnson Chloe C Findley Amy A Tolley Chloe C Arbuckle Rob R Kommineni Jyothi J Tyagi Nishith N

Journal of medical Internet research 20200921 9

<h4>Background</h4>Presbyopia is defined as the age-related deterioration of near vision over time which is experienced in over 80% of people aged 40 years or older. Individuals with presbyopia have difficulty with tasks that rely on near vision. It is not currently possible to stop or reverse the aging process that causes presbyopia; generally, it is corrected with glasses, contact lenses, surgery, or the use of a magnifying glass.<h4>Objective</h4>This study aimed to explore how individuals us ...[more]

PMID: 32955443

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Project description:BackgroundSocial media platforms are increasingly being used by stakeholders to generate, access, and share health-related information and experiences. Lung cancer is the most common cancer, impacting > 2 million patients globally. This observational study utilized a social listening approach to analyze social media trends and gain insights into stakeholder perceptions of lung cancer.MethodsThis social media study retrospectively collated data from open access blogs, forums, and social networking sites. Social media posts were collected between June 2019-May 2020 from 14 European countries. Using social media aggregator tools, posts comprising lung cancer and non-small cell lung cancer-specific terms were extracted. Manual and automated relevancy algorithms filtered the extracted information to provide the relevant dataset. This contextualized dataset was further mined to generate the final data for analysis.ResultsOf 1360 conversations analyzed, 42% were generated by patients/caregivers and 14% by healthcare professionals (HCPs). A majority of patients were 51-70 years old (approximately 50%) and 91% (n = 500/550) had late-stage cancer. Treatment (35%) and disease awareness (30%) were among the most discussed topic of the patient journey. Although the overall treatment sentiment was neutral, chemotherapy was the treatment type with the highest associated negative sentiment (28%); fewer negative sentiments were associated with immunotherapy (9%) and targeted therapy (2%), due to perceptions of longer survival outcomes and fewer side effects. In conversations that discussed clinical endpoints, "survivability" and "overall survival" (47 and 30%, respectively; n = 539) were most frequently mentioned by stakeholders. HCPs mostly used technical terms, whereas patients and caregivers used colloquial terms such as "getting rid of cancer". Emotional wellness was identified to have a huge impact on quality of life in lung cancer. Delay or treatment cancellations due to COVID-19, lack of effective treatments and funding, and lack of empathy by physicians emerged as the key unmet needs among patients/caregivers.ConclusionsSocial listening proved to be an effective tool to explore stakeholders' perceptions and their key unmet needs, typically not available in published literature or databases, and provides HCPs with valuable insights into the distress, doubts, and needs of lung cancer patients and caregivers.

Project description:BACKGROUND:Although gun violence has been identified as a major public health concern, the scope and significance of internet gun advertising is not known. OBJECTIVE:This study aimed to quantify the characteristics of gun advertising on social media and to compare the reach of posts by manufacturers with those of influencers. METHODS:Using a systematic search, we created a database of recent and popular Twitter and YouTube posts made public by major firearm manufacturers and influencers. From our sample of social media posts, we reviewed the content of the posts on the basis of 19 different characteristics, such as type of gun, presence of women, and military or police references. Our content analysis summarized statistical differences in the information conveyed in posts to compare advertising approaches across social media platforms. RESULTS:Sample posts revealed that firearm manufacturers use social media to attract audiences to websites that sell firearms: 14.1% (131/928; ±2.9) of Twitter posts, 53.6% (228/425; ±6.2) of YouTube videos, and 89.5% (214/239; ±5.1) of YouTube influencer videos link to websites that facilitate sales. Advertisements included women in efforts to market handguns and pistols for the purpose of protection: videos with women included protection themes 2.5 times more often than videos without women. Top manufacturers of domestic firearms received 98 million channel views, compared with 6.1 billion channel views received by the top 12 YouTube influencers. CONCLUSIONS:Firearm companies use social media as an advertising platform to connect viewers to websites that sell guns. Gun manufacturers appropriate YouTube servers, video streaming services, and the work of YouTube influencers to reach large audiences to promote the widespread sale of consumer firearms. YouTube and Twitter subsidize gun advertising by offering server and streaming services at no cost to gun manufacturers, to the commercial benefit of Google and Twitter's corporate ownership.

Project description:IntroductionTo compare the insights obtained about the experience of individuals with presbyopia (age-related impaired near vision) across three different sources of qualitative data: a structured targeted literature review, a social media listening (SML) review, and qualitative concept elicitation (CE) interviews with individuals with presbyopia and healthcare professionals (HCPs). The number of concepts identified, depth of data, cost and time implications, and value of the patient insights generated were explored and compared for each method.MethodsKeyword searches in bibliographic databases and review of abstracts identified 120 relevant publications; in-depth targeted literature review of the qualitative studies identified key symptoms/functioning concepts. SML was conducted using publicly accessible social media sources with focus on ophthalmologic diseases using a pre-defined search string. Relevant posts from individuals with presbyopia (n = 270) were analysed and key concepts identified. Semi-structured CE interviews were conducted with individuals with presbyopia (US n = 30, Germany n = 10, France n = 10), and HCPs (US = 3, France n = 2, Germany n = 1, Japan n = 1) who were experienced in treating presbyopia. Verbatim transcripts were coded using thematic analysis. A conceptual model summarised concepts identified across sources RESULTS: Out of the total of 158 concepts identified across the three sources, qualitative CE interviews yielded the highest number of concepts (n = 151/158, 96%), with SML yielding a third of the concepts (n = 51/158, 32%) and the literature review yielding the fewest concepts (n = 33/158, 21%). Qualitative CE interviews provided greater depth of data than SML and literature reviews. SML and literature reviews were less costly and quicker to run than qualitative CE interviews and also were less burdensome for participants.ConclusionQualitative CE interviews are considered the gold standard in providing greater depth of understanding of the patient experience, and more robust data. However, research requirements, budget, and available time should be considered when choosing the most appropriate research method. More time and cost-effective SML and literature review methods can be used to supplement qualitative CE interview data and provide early identification of measurement concepts. More research and regulatory guidance into less traditional qualitative methods, however, are needed to increase the value of SML and literature review data.

Project description:BackgroundCutaneous melanoma is an aggressive malignancy that is proposed to account for 90% of skin cancer-related mortality. Individuals with melanoma experience both physical and psychological impacts associated with their diagnosis and treatment. Health-related information is being increasingly accessed and shared by stakeholders on social media platforms.ObjectiveThis study aimed to assess how individuals living with melanoma across 14 European countries use social media to discuss their needs and provide their perceptions of the disease.MethodsSocial media sources including Twitter, forums, and blogs were searched using predefined search strings of keywords relating to melanoma. Manual and automated relevancy approaches filtered the extracted data for content that provided patient-centric insights. This contextualized data was then mined for insightful concepts around the symptoms, diagnosis, treatment, impacts, and lived experiences of melanoma.ResultsA total of 182,400 posts related to melanoma were identified between November 2018 and November 2020. Following exclusion of irrelevant posts and using random sampling methodology, 864 posts were identified as relevant to the study objectives. Of the social media channels included, Twitter was the most commonly used, followed by forums and blogs. Most posts originated from the United Kingdom (n=328, 38%) and Spain (n=138, 16%). Of the relevant posts, 62% (n=536) were categorized as originating from individuals with melanoma. The most frequently discussed melanoma-related topics were treatment (436/792, 55%), diagnosis and tests (261/792, 33%), and remission (190/792, 24%). The majority of treatment discussions were about surgery (292/436, 67%), followed by immunotherapy (52/436, 12%). In total, 255 posts discussed the impacts of melanoma, which included emotional burden (n=179, 70%), physical impacts (n=61, 24%), effects on social life (n=43, 17%), and financial impacts (n=10, 4%).ConclusionsFindings from this study highlight how melanoma stakeholders discuss key concepts associated with the condition on social media, adding to the conceptual model of the patient journey. This social media listening approach is a powerful tool for exploring melanoma stakeholder perspectives, providing insights that can be used to corroborate existing data and inform future studies.

Project description:BackgroundThe COVID-19 pandemic has drawn attention to various inequalities in global societies, highlighting discrepancies in terms of safety, accessibility, and overall health. In particular, sex workers are disproportionately at risk due to the nature of their work and the social stigma that comes alongside it.ObjectiveThis study examines how public social media can be used as a tool of professional and personal expression by sex workers during the COVID-19 pandemic. We aimed to explore an underresearched topic by focusing on sex workers' experiences with the ongoing COVID-19 pandemic on the social media platform Twitter. In particular, we aimed to find the main issues that sex workers discuss on social media in relation to the COVID-19 pandemic.MethodsA literature review followed by a qualitative analysis of 1458 (re)tweets from 22 sex worker Twitter accounts was used for this study. The tweets were qualitatively coded by theme through the use of intercoder reliability. Empirical, experimental, and observational studies were included in this review to provide context and support for our findings.ResultsIn total, 5 major categories were identified as a result of the content analysis used for this study: concerns (n=542, 37.2%), solicitation (n=336, 23.0%), herd mentality (n=231, 15.8%), humor (n=190, 13.0%), and blame (n=146, 10.0%). The concerns category was the most prominent category, which could be due to its multifaceted nature of including individual concerns, health issues, concerns for essential workers and businesses, as well as concerns about inequalities or intersectionality. When using gender as a control factor, the majority of the results were not noteworthy, save for the blame category, in which sexual and gender minorities (SGMs) were more likely to post content.ConclusionsThough there has been an increase in the literature related to the experiences of sex workers, this paper recommends that future studies could benefit from further examining these 5 major categories through mixed methods research. Examining this phenomenon could recognize the challenges unique to this working community during the COVID-19 pandemic and potentially reduce the widespread stigma associated with sex work in general.

Project description:IntroductionAmblyopia is an important cause of monocular vision impairment worldwide, and it negatively impacts patients' quality of life (QoL). Understanding patients' perspectives may help to optimize treatment outcomes and improve treatment adherence.MethodsThis was a non-interventional, retrospective analysis of social media data available in the public domain posted by patients and caregivers on selected social media channels (Twitter®, forums, blogs, and news) from 12 countries between July 2018 and June 2020.ResultsApproximately 2662 conversations relevant to the research objective were analyzed. The patient journey for adults and children was constructed based on the conversations. Eyeglasses, eye patches, contact lenses, and vision exercises were the common treatment options for amblyopia. Patients also reported vision improvement with emerging technologies such as digital therapeutics. Amblyopia and its treatment had a negative impact on QoL, and increased caregiver burden. Insurance coverage, long appointment waiting times, and recurring expenses of treatment options were reported as barriers to treatment. Non-compliance, switching between treatment options or technology, or discontinuation of treatment options was found to emanate from various issues including no improvement of the condition, discomfort with the treatment option, bullying, dissatisfaction with healthcare professional (HCP) recommendation, cost of treatment/issues with insurance coverage, side effects, and/or other unspecified reasons. The need for regular eye examinations, better diagnostic tests, awareness of the disease, awareness amongst HCPs about treatment options, and the need for better health insurance coverage policies emerged as unmet needs.ConclusionThis social media listening study generated insights on patients with amblyopia and their caregivers regarding the patient journey, treatment options, reasons for non-compliance, reasons for switching HCPs, barriers to treatment, and unmet needs. Further qualitative research is required to validate the findings.

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Project description:BackgroundThe wide use of mobile health apps has created new possibilities in social anxiety education and treatment. However, the content and quality of social anxiety apps have been quite unclear, which makes it difficult for people to choose appropriate apps to use on smartphones and tablets.ObjectiveThis study aims to identify the psychoeducational social anxiety apps in the two most popular Australian app stores, report the descriptive and technical information provided in apps exclusively for social anxiety, evaluate app quality, and identify whether any apps would be appropriate for people with social anxiety or others who know someone with social anxiety.MethodsThis systematic stepwise app search was guided by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) standards and entailed searching for, identifying, and selecting apps in the Australian Apple App and Google Play Stores; downloading, using, and reviewing the identified apps; reporting technical and descriptive information in the app stores, an online app warehouse, and individual apps; evaluating app quality; and deciding whether to recommend the use of the apps.ResultsIn the app stores, 1043 apps were identified that contained the keywords social anxiety, social phobia, or shyness in their names or descriptions. Of these, 1.15% (12/1043) were evaluated (3 iOS apps and 9 Android apps). At the time of evaluation, the apps were compatible with smartphones and tablet devices; 9 were free to download from the app stores, whereas 3 were priced between US $2.95 (Aus $3.99) and US $3.69 (Aus $5.00). Among the evaluated apps, 3 were intended for treatment purposes, 3 provided supportive resources, 1 was intended for self-assessment, and the remaining 5 were designed for multiple purposes. At the time of downloading, app store ratings were available for 5 apps. The overall app quality was acceptable according to the Mobile App Rating Scale (MARS). On the basis of the MARS app quality rating subscale (sections A-D), the apps functioned well in performance, ease of use, navigation, and gestural design. However, app quality was less favorable when rated using the MARS app subjective quality subscale (section E).ConclusionsThe psychoeducational social anxiety apps evaluated in our study may benefit people with social anxiety, health professionals, and other community members. However, given that none of the apps appeared to contain empirical information or were shown to clinically reduce social anxiety (or aid in managing social anxiety), we cannot recommend their use. App accessibility could be improved by developing apps that are free and available for a wider range of operating systems, both between and within countries and regions. Information communication and technology professionals should collaborate with academics, mental health clinicians, and end users (ie, co-design) to develop current, evidence-based apps.

Dataset Information

Social Media Listening to Understand the Lived Experience of Presbyopia: Systematic Search and Content Analysis Study.

Publications

Social Media Listening to Understand the Lived Experience of Presbyopia: Systematic Search and Content Analysis Study.

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