Abstract

Cell and gene therapies (CGTs) are novel technologies poised to transform oncology treatment. In 2017, the U.S. Food and Drug Administration approved two CGTs for hematologic cancers. Social media provides a unique opportunity for patient-centric research to uncover what patients and clinicians value as important in their early experiences with CGTs. This study aimed to describe patient and clinician perceptions of CGT using publicly available social media forums in the U.S. Patient data included posts from oncology-specific patient forums and clinician data included transcripts from interviews with clinicians from open online sources. Data were extracted and anonymised, and further analysed using qualitative methods (thematic and content analyses). Emerging topics were coded and organised into themes and sub-themes. 302 patient posts across 6 patient forums dated between 2014-2017, and 35 clinician transcripts across 2 sites (OncoLive TV, Patient Power) between 2012- 2017 were included. The patient data review highlighted that patients often discussed CGT trial experiences and perceptions, CGT efficacy/safety, and shared scientific research findings from the literature and conferences. Forum users discussed challenges on entering a trial, as well as relayed CGT success stories. Long-term survival, efficacy, and side effects of CGT were discussed often in making decisions about enrolling in clinical trials. Reviewed clinician data included: experiences of trial efficacy/safety, concerns about increased costs (due to development, administration of CGTs, safety management), criteria for patient eligibility (age, fitness, cancer stage), and comparisons of CGTs with other immunotherapies and stem-cell transplants. Online forums are a vehicle for patients and physicians to express early experiences with CGT. Our analyses suggest that both groups are seeking information around several aspects of CGT and may benefit from increased education in these areas. Also, factors driving CGT treatment decisions should be further explored.

Full Text
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