Patients and families can make better healthcare decisions that are consistent with patients’ needs, values, and preferences when they are more informed and educated about the disease, according to study findings that Anne C. Roc, PhD, of PlatformQ Health in Needham, MA, discussed at the ASH Annual Meeting on December 3, 2018.
Researchers created an education activity for patients with acute myeloid leukemia (AML) that included general facts, testing and results interpretations, treatment options, and resources for self-care and support. A tailored AML education approach can result in immediate and sustained gains in knowledge and behavior, according to the study.
The researchers developed a one-hour online video-based program in July 2017 that addressed patient and caregiver needs. The video included an interactive panel discussion with an AML physician specialist, AML nurse practitioner specialist, and patient advocate from the Leukemia and Lymphoma Society. The program included educational slides, live polling, question-and-answer sessions with the audience, and real-world patient video vignettes.
The videos were initially broadcast live but were later broken into four smaller segments and made available on-demand on CancerCoachLive.com and LLS.org and shared on social media for six months. The investigators administered knowledge-focused tests at three time points: preactivity, immediately postactivity, and at eight weeks’ follow-up, which also included behavioral and communication-focused questions.
A total of 8,935 learners engaged with the program; social media was responsible for 8,673 engagements. More than half of respondents (69%) reported that communication and collaboration with their healthcare team improved following the educational opportunity, and 27% reported improvements in care. The activity led to improved communication about the disease, traditional and alternative forms of treatment, and adverse events (AEs).
Participants reported being more actively engaged, altering self-care behaviors when undergoing chemotherapy, and staying informed of research and treatments.
The researchers observed improvements on four areas:
- Common long-term or late treatment-related AEs
- Factors related to treatment for AML
- Factors related to testing for AML
- The relationship between AML symptoms and low blood count
Increased education “may improve patient adherence to treatment, quality of life, and outcomes,” the researchers concluded.