Exploring Chronic Pain and Pain Management Perspectives: Qualitative Pilot Analysis of Web-Based Health Community Posts

Abstract

Background: Patient perspectives are central to the US Food and Drug Administration’s benefit-risk decision-making process in the evaluation of medical products. Traditional channels of communication may not be feasible for all patients and consumers. Social media websites have increasingly been recognized by researchers as a means to gain insights into patients’ views about treatment and diagnostic options, the health care system, and their experiences living with their conditions. Consideration of multiple patient perspective data sources offers the Food and Drug Administration the opportunity to capture diverse patient voices and experiences with chronic pain. Objective: This pilot study explores posts from a web-based patient platform to gain insights into the key challenges and barriers to treatment faced by patients with chronic pain and their caregivers. Methods: This research compiles and analyzes unstructured patient data to draw out the key themes. To extract relevant posts for this study, predefined keywords were identified. Harvested posts were published between January 1, 2017, and October 22, 2019, and had to include #ChronicPain and at least one other relevant disease tag, a relevant chronic pain management tag, or a chronic pain management tag for a treatment or activity specific to chronic pain. Results: The most common topics discussed among persons living with chronic pain were related to disease burden, the need for support, advocacy, and proper diagnosis. Patients’ discussions focused on the negative impact chronic pain had on their emotions, playing sports, or exercising, work and school, sleep, social life, and other activities of daily life. The 2 most frequently discussed treatments were opioids or narcotics and devices such as transcutaneous electrical nerve stimulation machines and spinal cord stimulators. Conclusions: Social listening data may provide valuable insights into patients’ and caregivers’ perspectives, preferences, and unmet needs, especially when conditions may be highly stigmatized.