Evaluating Patient Experiences in Dry Eye Disease Through Social Media Listening Research

Cook, Nigel S.; Mullins, Anmol; Gautam, Raju; Medi, Sharath; Prince, Clementine; Tyagi, Nishith; Kommineni, Jyothi

doi:10.1007/s40123-019-0188-4

Cited by 47 publications

(45 citation statements)

References 29 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…These results reinforce the considerable health burden posed by severe DED21 due to symptoms affecting sufferers’ physical and visual appearance and functioning, pain and non-DED-specific aspects. The impact of DED on patients’ emotional well-being was also highlighted in the social media listening project preceding this survey, which found that around 1% of patients with dry eye mentioned suicidal tendencies in their online posts 22. These perceptions were echoed in our QoL analysis, in which the EQ-5D score obtained for all patients (0.713) positions the burden of DED between that of diabetes mellitus (0.75123) and multiple sclerosis before relapse (0.64824).…”

Section: Discussionmentioning

confidence: 69%

Comparing the needs and preferences of patients with moderate and severe dry eye symptoms across four countries

et al. 2019

Self Cite

View full text Add to dashboard Cite

Background/aimsUnderstanding patients’ perspectives of their disease can inform drug development and treatment decisions. In this study, we compared the preferences and needs of patients with moderate and severe dry eye symptoms from four different countries.MethodsA quantitative questionnaire was developed based on the self-explicated conjoint methodology and was administered to 160 patients with moderate or severe dry eye disease (DED) from Australia, Germany, UK and the USA.ResultsPatients with moderate dry eye symptoms ranked ‘treatment satisfaction’ as the most important aspect, whereas ‘symptom bother’ was more relevant for those in the severe group. Both the moderate and severe groups classified treatment effectiveness as the most important treatment attribute. This result was consistent across the four countries, although US patients gave significantly higher scores than patients from other countries (p<0.001). Furthermore, patients from Australia ranked ‘treatment experience’ as significantly more important than the concern of side effects, whereas respondents from Germany exhibited the opposite trend (p<0.05 for both). The health burden of DED is reflected in the average European Quality of Life-5 Dimensions 5-level (EQ-5D) scores of 0.764 and 0.658 for patients with moderate and severe disease, respectively.ConclusionOur results confirm that across the countries in the study, moderate and severe DED has a major impact on patients’ quality of life and daily activities. By providing insight into the patient perspective of DED, our study helps identify outcomes that are important to patients and may guide future drug development and clinical decision-making.

show abstract

Section: Discussionmentioning

confidence: 69%

Comparing the needs and preferences of patients with moderate and severe dry eye symptoms across four countries

et al. 2019

Self Cite

View full text Add to dashboard Cite

show abstract

“…The desk research carried out through a literature review and social media listening allowed us to identify three broad aspects relevant to patients with DED: disease symptoms, impairment of QoL (especially negative impact on daily/work activities and emotions) and patient perceptions of unmet need 15…”

Section: Resultsmentioning

confidence: 99%

“…The literature review was followed by an analysis of social media DED content publicly accessible in the English language 15. Twitter, blogs/media, forums and newswires (a total of 1192 posts between December 2016 and February 2017) were analysed to source insights on disease burden, diagnosis, treatment patterns and QoL, with data retrieved and collected using a social media data aggregator tool (Social Studio, Salesforce, USA) 15…”

Section: Methodsmentioning

confidence: 99%

Defining the needs and preferences of patients with dry eye disease

et al. 2019

Self Cite

View full text Add to dashboard Cite

ObjectiveDry eye disease is a multifactorial chronic disease, leading to ocular discomfort and visual disturbance with a substantial impact on quality of life. Therefore, the patient’s perspective should be taken into account early in the drug development process. We have developed a step-by-step methodology based on the self-explicated conjoint approach to assess the needs and preferences of patients with moderate-to-severe dry eye disease.Methods and AnalysisFollowing a literature review and social media listening (step 0), qualitative phone call interviews were conducted with 12 patients (step 1). Patients’ responses underwent content analysis and were coded, quantified and displayed as charts. Based on the emerging trends and attributes identified as relevant in steps 0 and 1, a quantitative online questionnaire was designed and conducted with 160 patients across four countries (step 2).ResultsThe online questionnaire was rated as easy/very easy to understand by 60% of respondents, 62% rated the survey as easy/very easy to complete and 71% rated it as interesting/very interesting. Treatment satisfaction was the most important aspect for patients, and the three most relevant attributes were as follows (with the most important indexed to 100%): ‘treatment effectiveness on symptoms of dry eyes’ (100%), ‘frequency of treatment use’ (96%) and ‘how the treatment works’ (95%).ConclusionOur methodology was well received by patients, and the results will help inform future clinical trial development and discussions with health technology assessment bodies and regulators on unmet needs and product attributes that are of most value to patients with dry eye disease.

show abstract

“…Social media reviews are increasingly being used to investigate the patient experience of health conditions such as dry eye and chronic obstructive pulmonary disease [ 13 - 15 ]. Other studies have used social media listening to investigate the emotional impact of caregivers who look after patients with leukemia [ 16 ] and to identify posts discussing potential misuse or nonmedical use of antidepressants [ 17 ].…”

Section: Introductionmentioning

confidence: 99%

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

Wolffsohn¹,

Leteneux-Pantais²,

Chiva-Razavi³

et al. 2020

J Med Internet Res

Self Cite

View full text Add to dashboard Cite

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.

show abstract

Evaluating Patient Experiences in Dry Eye Disease Through Social Media Listening Research

Cited by 47 publications

References 29 publications

Comparing the needs and preferences of patients with moderate and severe dry eye symptoms across four countries

Comparing the needs and preferences of patients with moderate and severe dry eye symptoms across four countries

Defining the needs and preferences of patients with dry eye disease

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

Contact Info

Product

Resources

About