OBJECTIVES: The rapid increase of social media and integration of online interaction in regular daily-life, provides researchers with the opportunity to study issues important to patients in an organically occurring setting. The aim of this study was to explore the feasibility of using YouTube™ as a data source for qualitative exploration of the patient-experience of living with Acute Myeloid Leukemia (AML), focusing on AML patients likely ineligible for intensive chemotherapy.
METHODS: A search of YouTube™ was performed, focusing on patient stories of living with AML. Selection criteria included patient-age (≥60 years: self-reported/researcher-observed), and treatment type (low-intensive treatment/palliative-care or chemotherapy). Video footage was manually reviewed, and content analysed thematically to address key research questions on treatment decisions/preferences.
RESULTS: 53 videos were identified: 25 were excluded due to age (patient self-report or researcher-observed <60) or lack of relevant information. The 28 videos reviewed in-depth included 10 individual contributors (9 AML patients [5 Male]; 1 caregiver; patient age range 60-80 years). Videos yielded rich information on key themes including; perceived benefits and challenges of living longer and perceived expectations/benefits/disadvantages to initiating/continuing treatment. Key drivers for treatment decisions included prior experience, efficacy expectations and anticipated daily-life-impacts. Specific value of YouTube™ as a data source included easily accessible data, removal of patient burden, removal of interviewer bias and recall issues inherent with traditional data-collection methods. Limitations included: lack of control of video content (relevant content often embedded within irrelevant narratives) and patient sample characteristics; potential bias towards younger video uploaders; and potential variation between patients’ online- and offline-behaviour.
CONCLUSIONS: This study illustrates the challenges and opportunities associated with using a social media platform such as YouTube™ to collect patient reported information and demonstrates how this data source can provide valuable insights into the patient disease-experience that may not be captured using traditional data collection methods.
FUNDING: Pfizer Inc.
