LAUSR

For adult patients with chronic kidney disease undergoing hemodialysis, pruritus is a common and often severe concomitant condition that adversely affects health-related quality of life (HRQoL). Patient voice is important for understanding the burden of hemodialysis-associated pruritus. However, patients may not always report their itching to their healthcare provider. The objective of this social media listening study, the first in this therapeutic area, was to report insights into the itching burden experience of adults with hemodialysis-associated pruritus. We conducted an observational study using keyword-based searches in multiple languages, focusing on hemodialysis and pruritus, to gather data from social media platforms in the USA, UK, France, Germany and Spain. Posts from January 2018 to November 2023 were collected, cleaned to remove duplicate entries, and masked to ensure patient privacy. After translating all posts into English, subject matter experts screened them for relevancy and categorized relevant information for quantitative and qualitative analysis. Of 14,749 posts initially retrieved, 1,200 were considered relevant to hemodialysis-associated pruritus. Although the country of origin was not identifiable in the majority of posts, there were 122 posts from Germany, 70 from France, 30 from the UK and 6 from Spain. Facebook was the most common source of posts overall (81%), followed by Reddit (8%), patient community forums (6%) and X (formerly Twitter; 5%). Patient burden, highlighting the physical, emotional, and social burdens associated with itching, was one of the most common themes identified overall, mentioned in 74% (893) of all relevant posts. Other themes included living with itching (82%), itching treatment (49%), cause of itching (44%) and unmet needs (18%). These theme trends were observed overall and in the subsets of posts from Germany, France and the UK. Of the 893 posts on patient burden, 94% related to the direct burden of itching, where patients described the challenges of persistent and intolerable itching having a substantial impact on HRQoL. Sleep disruption, anxiety, and stress were highlighted as having a considerable effect on the mental well-being of patients, discussed in 17% of patient burden posts. Other burdens mentioned related to treatment (10%) and health service (5%). Regarding itching locations, the legs and hands were the most commonly mentioned areas. Other frequently mentioned areas were the feet, back, and face. Our study shows that hemodialysis-associated pruritus continues to impose a considerable burden on patients and a substantial impact on HRQoL, affecting patients’ mental health and well-being. The use of social media listening is a novel tool to gather experiences of patients and provide insights into the nature of burdens faced and HRQoL impact.