“Patient-reported information (PRI) shared on social media provides a unique opportunity to understand patient perspectives outside of the formal research context,” the authors explained.
They collected data from YouTube and 3 patient advocacy websites (Patient Power, The Patient Story and Leukemia Care), as well as video footage and discussion blogs. They pulled data from social media posts, including demographic information and information on related illnesses.
Investigators assessed 935 social media posts, but ultimately only included 63 posts (40 videos, 5 comments, and 18 blog posts) from 41 unique contributors in the final review. Prior to treatment for ALL, the most frequently reported symptoms were fatigue (48.8%), shortness of breath (31.7%), and bruising (29.3%).
They also reported the following impacts on the HRQL of ALL and its treatment:
- Physical limitations (19.5%), including mobility, fine motor skills, and lifting / carrying
- Daily living (26.8%), including personal care, daily chores, and leisure / hobby activities
- Work (39.0%), including ability to keep a job, career change and financial impact
- Social functioning (4.9%), including changes in existing relationships and ability to care for children
- Psychological / emotional impact (61.0%), including shock, feat of the future, depression, anxiety, self-image, anger / frustration and loneliness
Treatment of side effects, such as neutropenia, change in taste, and nausea, was associated with changes in patients’ eating habits and weight loss.
The majority (75.6%) of patients reported having been treated with chemotherapy, followed by bone marrow transplant (26.8%), radiation therapy (12.2%), cell therapy Chimeric antigen receptor T (12.2%), stem cell transplant (12.2%), immunotherapy (9.8%), corticosteroid therapy (9.8%), blood transfusion (2.4 %) and umbilical cord blood transplant (2.4%).
Overall, about half (48.8%) said they had used more than one type of treatment. These treatments were associated with long-lasting side effects such as fatigue (26.8%), hair loss (27.8%) and nausea (22.0%).
“ALL of the symptoms primarily affected the physical functioning, activities of daily living, and work capacity of the patients, while the symptoms and treatment-related impacts primarily affected the emotional well-being of the patients,” the researchers noted.
Morrison R, Sikirica S, Crawford R, et al. Acute lymphoblastic leukemia patient experience and its treatment: a social media review. Presented at: EHA2021 Virtual; June 9-17, 2021. Poster EP370.