JMIR Publications

ABSTRACT

Background:

Adult patients with acute lymphoblastic leukemia (ALL) report substantial disease- and treatment-related impacts on their health-related quality of life (HRQOL). Patient-reported information (PRI) shared on social media may provide a distinct opportunity to understand the patient experience outside of formal research contexts and help inform the development of novel therapies.

Objective:

To assess the PRI shared on social media websites to gain a better understanding of the symptom, HRQOL, and treatment impacts on individuals with ALL.

Methods:

This qualitative social media review identified English-language posts on three patient advocacy websites (Patient Power, The Patient Story, and Leukemia Care) and YouTube that included PRI about experiences with ALL and/or ALL treatments shared by adults (aged ≥18 years) with a self-reported ALL diagnosis. Patients’ demographic and disease characteristics were extracted from posts (where available), and posts were analyzed thematically. A network analysis was conducted to delineate possible associations among ALL symptoms, HRQOL impacts, and treatment-related symptoms and impacts.

Results:

Of the 935 social media posts identified, 63 met the review criteria: 40 videos, 5 comments posted in response to videos, and 18 blog posts. The 63 posts were contributed by 41 individual patients (21 males, 18 females, 2 not reported); 13 patients contributed >1 source of data. Fatigue (n=20, 49%), shortness of breath (n=13, 32%), and bruising (n=12, 29%) were the symptoms prior to treatment most frequently discussed by patients. Patients also reported impacts on personal relationships (n=26, 63%), psychological and emotional well-being (n=25, 61%), and work (n=16, 39%). Although inpatient treatment reportedly restricted patients’ independence and social functioning, it also provided a few patients with a sense of safety. Patients frequently relied on their doctors to drive their treatment decisions but were also influenced by family members. The network analysis indicated that disease-related symptoms were primarily associated with patients’ physical functioning, activities of daily living, and ability to work, while treatment-related symptoms were primarily associated with emotional well-being.

Conclusions:

Patients’ social media posts suggest that inpatient care for ALL is associated with restricted independence and social functioning. However, inpatient care also provided a sense of safety for some patients. This novel review of PRI indicates that treatment and ALL-related symptoms are associated with different HRQOL impacts, showing an explicit link between treatment-related symptoms and emotional well-being.