Understanding the Needs and Lived Experiences of Patients With Graft-Versus-Host Disease: A Real-World European Public Social Media Listening Study
ABSTRACT
Background:
Graft-versus-host disease (GVHD) is the major cause of short- and long-term morbidity and mortality after allogeneic hematopoietic stem cell transplantation. Treatment options beyond the standard first-line corticosteroid therapy remain limited, and prolonged treatment, particularly in patients with chronic GVHD, often leads to impaired quality of life (QoL) and low functional status. A better understanding of the needs and experiences of patients with GVHD is required to improve patient care.
Objective:
The objective was to explore different social media (SM) channels for gathering and analyzing the needs and experiences of patients and other GVHD stakeholders across 14 European countries.
Methods:
This was a retrospective analysis of SM data available in the public domain. The Talkwalker Social Analytics tool collected data from open-access forums, blogs and various social networking sites using pre-defined search strings. The raw dataset derived from the aggregator tool was automatically screened for the relevancy of posts, generating the curated dataset that was manually reviewed to identify those posts that fell within the pre-defined inclusion and exclusion criteria. This final dataset was then used for the deep-dive analysis.
Results:
A total of 9016 posts relating to GVHD were identified between April 2019 and April 2021. De-duplication and relevancy checks resulted in 325 insightful posts, with Twitter contributing 250 (77%) posts, blogs 49 (15%) posts, forums 13 (4%) posts, Facebook 7 (2%) posts, and Instagram and YouTube 4 (1%) posts each. Patients with GVHD were the primary stakeholders, contributing 63% of all SM posts. Of 234 posts, treatment was the most discussed stage of the patient journey (68%), followed by the symptoms (33%) and diagnosis/tests (21%). Among treatment-related posts (n=159), steroid therapy was most frequently reported (34%). Posts relating to treatment features (n=110) identified efficacy (41%), side effects (35%) and frequency/dosage (29%) as the most frequently discussed features. Symptoms associated with GVHD were described in 24% of posts (N=325), including skin-related conditions (64%), dry eyes or vision change (17%), pain and cramps (21%) and fatigue/muscle weakness (16%). The impacts of GVHD on QoL were discussed in 51% of all posts (N=325), with the emotional, physical/functional, social and financial impact mentioned in 69%, 50%, 5% and 2% of these posts, respectively. Unmet needs were reported by patients or caregivers in 24% of analyzed conversations (N=325), with treatment-related side effects being the most common (45%) among these posts.
Conclusions:
SM listening is a useful tool to identify medical needs. Treatment of GVHD, including treatment-related side effects, as well as emotional and physical impact on QoL are the major topics that GVHD stakeholders mention on SM. We encourage a structured discussion of these topics in interactions between healthcare providers and patients with GVHD. Clinical Trial: Not applicable
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