Comparison of Literature Review, Social Media Listening, and Qualitative Interview Research Methods in Generating Patient-Reported Symptom and Functional Impact Concepts of Presbyopia

Abstract

Introduction To 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. Methods Keyword 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. Conclusion Qualitative 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. Supplementary Information The online version contains supplementary material available at 10.1007/s40123-022-00620-w.

Patient and Caregiver Perceptions of Advanced Bladder Cancer Systemic Treatments: Infodemiology Study Based on Social Media Data

“…This study also highlights that social media posts from patients and caregivers may provide real-world insights into treatment perceptions and quality of life, as previously shown in other studies [ 34 ]. It would also be interesting to cross-reference this or a future study applying our methodology with other qualitative studies on patients with advanced BC to compare the different signals and analyze their potential complementarity [ 16 ]. The extension of our research method to other countries or regions may be also valuable to identify initiatives that could improve treatment perceptions, quality of care, and quality of life for patients with BC and their caregivers.…”

“…Another approach to exploring patients’ and caregivers’ perspectives on cancer is to use social media. Social media offer unprompted discussions between patients and caregivers, which may capture more genuine perspectives than traditional surveys, questionnaires, or interviews [ 14 - 16 ]. Social media also allow the collection of data from a much broader, geographically dispersed sample (ie, from a wide range of countries or locations), which may mitigate issues with sample size when examining very specific, nuanced patient groups.…”

2022 Glenn A. Fry Award lecture: Enhancing clinical assessment for improved ophthalmic management

“…We have been involved in developing quality-of-life questionnaires for macular degeneration, 83,84 visual impairment, [85][86][87][88][89][90] and presbyopia. [91][92][93] With time, we have had to develop some further to remain relevant to changing lifestyles and impact of social media, 94,95 especially the ubiquitous digital environment. 96,97 We have demonstrated that they are influenced by whether they are self-completed or the questions are posed to patients, so this needs to remain the same if scores are to be compared over time or across patients/treatments.…”

Patient Perception and Self-Reported Outcomes with Presbyopia-Correcting Intraocular Lenses (PCIOLs): A Social Media Listening Study

“…Given the dramatic growth in social media use, social media listening (SML) is increasingly being used to gather insights and information on patient experience across a variety of diseases and treatments [ 21 – 23 ]. Over the last few years, different SML studies have been published investigating the patient experience also in ophthalmologic conditions such as dry eye disease, presbyopia, retinal detachment, or amblyopia [ 24 – 28 ], as well as describing ophthalmology information available on social media platforms like Reddit, Instagram, Facebook, Twitter, or LinkedIn [ 29 – 32 ]. Data from SML exploring patient experience with presbyopia is limited to two publications which evaluated data acquired up to August 2017 [ 25 , 28 ].…”

“…Over the last few years, different SML studies have been published investigating the patient experience also in ophthalmologic conditions such as dry eye disease, presbyopia, retinal detachment, or amblyopia [ 24 – 28 ], as well as describing ophthalmology information available on social media platforms like Reddit, Instagram, Facebook, Twitter, or LinkedIn [ 29 – 32 ]. Data from SML exploring patient experience with presbyopia is limited to two publications which evaluated data acquired up to August 2017 [ 25 , 28 ]. These studies explored how individuals with presbyopia used social media to describe their experiences and confirmed presbyopia has a substantial impact on an individual’s daily life; however, these studies did not report on specific patients’ perceptions or outcomes by type of PCIOL [ 25 , 28 ].…”