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

Abstract

Introduction

Social media listening (SML) is an approach to assess patient experience in different indications. This is the first study to report the results of using SML to understand patients’ experiences of living with dry eye disease (DED).

Methods

Publicly available, English-language social media content between December 2016 and August 2017 was searched employing pre-defined criteria using Social Studio ^®, an online aggregator-tool for posts from social media channels. Using natural language processing (NLP), posts were indexed using patient lexicon and disease-related keywords to derive a set of patient posts. NLP was used to identify relevance, followed by further manual evaluation and analysis to generate patient insights.

Results

In all, 2279 possible patient records were identified following NLP, which were filtered for relevance to disease area by analysts, resulting in a total of 1192 posts which formed the basis of this study. Of these, 77% ( n = 915) were from the USA. Symptoms, causes, diagnosis and treatments were the most commonly discussed themes. Most common symptoms mentioned were eye dryness (138/901), pain (114/901) and blurry vision (110/901). Pharmaceutical drugs (prescription and over-the-counter; 55%; 764/1393), followed by medical devices (20%; 280/1393), were mentioned as major options for managing symptoms. Of the pharmaceutical drugs, eye drops (33%; 158/476) and artificial tears (10%; 49/476) were the most common over-the-counter options reported, and Restasis ^® (22%; 103/476) and Xiidra ^® (6%; 27/476) were the most common prescription drugs. Patients voiced a significant impact of DED on their daily activities (4%; 9/224), work (23%; 51/224) and driving (12%; 26/224). Lack of DED specialists, standard diagnostic procedures, effective treatment options and need to increase awareness of DED among patients were identified as the key unmet needs.

Conclusions

Insights revealed using SML strengthen our understanding about patient experiences and their unmet needs in DED. This study illustrates that an SML approach contributed effectively in generating patient insights, which can be utilised to inform early drug development process, market access strategies and stakeholder discussions.

Funding

Novartis Pharma AG, Basel, Switzerland.

Plain Language Summary

Plain language summary available for this article.

Electronic supplementary material

The online version of this article (10.1007/s40123-019-0188-4) contains supplementary material, which is available to authorized users.

Plain Language Summary

Dry eye disease (DED) is a chronic health condition that affects a large number of people. The effects of DED can cause many problems in the lives of patients. Social media listening is an upcoming methodology which lends itself to researching how diseases can affect patients, by looking at what people discuss in online social media forums about their disease. The thoughts and opinions expressed openly by patients online distinguish this approach from traditional, structured and solicited patient research, and it is considered that the results of such social media listening studies should reflect spontaneous patient perspectives on their disease. In this study, patients’ internet social media posts about DED were identified using software through a keyword search and further analysed. It was found that most DED patients talked about their symptoms, causes, diagnosis and treatments when discussing DED. Most patients said they experienced eye dryness, pain and blurry vision. Daily activities like work and driving were all greatly affected by DED. Concerning what would make things better for them, patients mentioned the need for standard methods of diagnosing DED, better treatment options and need for a better awareness of the disease. Emotions expressed tended to be very negative, reflective of the impact of the disease on their lives. This study illustrates how DED negatively affects the lives of patients and highlights their unmet needs; it may help doctors, pharmaceutical companies and health insurance providers better understand the challenges faced by patients with this disease.

Electronic supplementary material

The online version of this article (10.1007/s40123-019-0188-4) contains supplementary material, which is available to authorized users.