Contributions
Abstract: EP370
Type: E-Poster Presentation
Session title: Acute lymphoblastic leukemia - Clinical
Background
Adult patients with acute lymphoblastic leukemia (ALL) report substantial disease- and treatment-related impacts on their health-related quality of life (HRQOL) despite improvements in treatment strategies over the past 10 years. As novel therapies are developed, greater insight into patients’ experiences of current ALL treatments is needed. Patient-reported information (PRI) shared on social media provides a distinct opportunity to understand patients’ perspectives outside of the formal research context.
Aims
This study—to our knowledge the first of its kind in ALL—thematically analyzed PRI shared on patient advocacy websites and YouTube to better understand patients’ experiences of ALL and its treatment.
Methods
Searches were conducted of 3 patient advocacy websites (Patient Power, The Patient Story, and Leukemia Care) and YouTube to identify individual social media posts describing self-reported PRI on experiences of ALL and/or ALL treatments. English-language posts were included for review if posts were shared by adults (aged ≥ 18 years) with a self-reported ALL diagnosis and if content was relevant to patient ALL and treatment experience. Patients’ demographic and disease characteristics were extracted from posts (where available), and the posts were analyzed thematically. A network analysis was conducted to delineate relationships 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. Twenty-one (51%) of the patients were male. Fatigue (n=20, 49%), shortness of breath (n=13, 32%), and bruising (n=12, 29%) were the symptoms prior to treatment that were most frequently discussed by patients. Substantial HRQOL impacts were also recorded, with 26 (63%) patients discussing impacts on personal relationships, 25 (61%) discussing psychological and emotional impacts, and 16 (39%) discussing impacts on work. Key themes relating to patients’ treatment experiences included perspectives on inpatient treatment, treatment expectations and preferences, and treatment decision-making. Although inpatient treatment restricted patients’ independence and social functioning, it also provided a few patients with a sense of safety. Patients also preferred treatments that minimized impact on their HRQOL; treatment intensity and time commitment were key drivers of HRQOL impact. Patients frequently relied on their doctors to drive their treatment decisions but were also influenced by family members. The network analysis indicated that ALL symptoms primarily affected patients’ physical functioning, activities of daily living, and ability to work, while treatment-related symptoms and impacts primarily affected patients’ emotional well-being.
Conclusion
This study provides novel and valuable insight into the patient experience of ALL and its treatments through an analysis of PRI shared on social media. ALL and treatment-related symptoms have distinct and often detrimental impacts on patients’ HRQOL. Results were largely intuitive, with treatment side effects being particularly burdensome for patients and impacting their HRQOL. Patients report that in-patient care is associated with certain challenges (e.g., restricted independence and social functioning) but is also appreciated by a few patients for providing them with a sense of security. Overall, patients hope for treatments with less severe impacts on their HRQOL.
Keyword(s): Acute lymphoblastic leukemia, Patient, Quality of life, Treatment
Abstract: EP370
Type: E-Poster Presentation
Session title: Acute lymphoblastic leukemia - Clinical
Background
Adult patients with acute lymphoblastic leukemia (ALL) report substantial disease- and treatment-related impacts on their health-related quality of life (HRQOL) despite improvements in treatment strategies over the past 10 years. As novel therapies are developed, greater insight into patients’ experiences of current ALL treatments is needed. Patient-reported information (PRI) shared on social media provides a distinct opportunity to understand patients’ perspectives outside of the formal research context.
Aims
This study—to our knowledge the first of its kind in ALL—thematically analyzed PRI shared on patient advocacy websites and YouTube to better understand patients’ experiences of ALL and its treatment.
Methods
Searches were conducted of 3 patient advocacy websites (Patient Power, The Patient Story, and Leukemia Care) and YouTube to identify individual social media posts describing self-reported PRI on experiences of ALL and/or ALL treatments. English-language posts were included for review if posts were shared by adults (aged ≥ 18 years) with a self-reported ALL diagnosis and if content was relevant to patient ALL and treatment experience. Patients’ demographic and disease characteristics were extracted from posts (where available), and the posts were analyzed thematically. A network analysis was conducted to delineate relationships 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. Twenty-one (51%) of the patients were male. Fatigue (n=20, 49%), shortness of breath (n=13, 32%), and bruising (n=12, 29%) were the symptoms prior to treatment that were most frequently discussed by patients. Substantial HRQOL impacts were also recorded, with 26 (63%) patients discussing impacts on personal relationships, 25 (61%) discussing psychological and emotional impacts, and 16 (39%) discussing impacts on work. Key themes relating to patients’ treatment experiences included perspectives on inpatient treatment, treatment expectations and preferences, and treatment decision-making. Although inpatient treatment restricted patients’ independence and social functioning, it also provided a few patients with a sense of safety. Patients also preferred treatments that minimized impact on their HRQOL; treatment intensity and time commitment were key drivers of HRQOL impact. Patients frequently relied on their doctors to drive their treatment decisions but were also influenced by family members. The network analysis indicated that ALL symptoms primarily affected patients’ physical functioning, activities of daily living, and ability to work, while treatment-related symptoms and impacts primarily affected patients’ emotional well-being.
Conclusion
This study provides novel and valuable insight into the patient experience of ALL and its treatments through an analysis of PRI shared on social media. ALL and treatment-related symptoms have distinct and often detrimental impacts on patients’ HRQOL. Results were largely intuitive, with treatment side effects being particularly burdensome for patients and impacting their HRQOL. Patients report that in-patient care is associated with certain challenges (e.g., restricted independence and social functioning) but is also appreciated by a few patients for providing them with a sense of security. Overall, patients hope for treatments with less severe impacts on their HRQOL.
Keyword(s): Acute lymphoblastic leukemia, Patient, Quality of life, Treatment