Abstract
Background: Delivering high-quality cancer care requires meeting the needs of cancer patients and their families. The Committee on Improving the Quality of Cancer Care has stated that systems should support all patients and families in making informed health care decisions that are consistent with their needs, values, and preferences (http://www.ncbi.nlm.nih.gov/books/NBK202146/). Fundamental to this is the need to foster good communication, developing and disseminating evidence-based information to inform patients, caregivers, and the cancer care team about treatment options. We created a patient education activity to empower patients with information and resources focused on: general facts about AML, testing and results interpretation, treatment options, and resources for self-care and support.
Methods: A one-hour online video-based program targeting patients with AML and their caregivers was developed in July 2017 to address the identified audience needs. The program was video-based, and broadcast an interactive panel discussions with a physician specialist in AML, a nurse practitioner specialist in AML, and a patient advocate from the Leukemia & Lymphoma Society. The program integrated educational slides, live polling and Q&A with audience participants, and patient video vignettes that touched on real patient experiences regarding life with AML. Programs were initially broadcast live and were later "chapterized" into 4 smaller segments and made available on-demand at CancerCoachLive.com, LLS.org, and on social media platforms (e.g., LLS and Cancercoach Facebook pages, YouTube) for 6 months. Knowledge-focused test questions were administered at 3 time points (pre-activity, immediate post-activity, and 8-week [follow-up] post), in addition to behavioral and communication-focused questions being asked at the follow up point. Data from these questions, live polling responses, and learner-submitted questions during live Q&A were analyzed to determine engagement, lessons learned and continuing patient-education gaps.
Results: In total, 8,935 learners took part in the program (262 on cancercoach platform/8,673 via social media platforms). 69% of respondents reported that communication and collaboration with their healthcare provider(s) improved as a result of participating in the educational program; 27% reported improvements in care for their health. Respondents reported examples of improved communication with their HCPs specific to: their disease, traditional and alternative forms of treatment, and side-effects. Reported changes in behavior and self-care included: being more active, altering self-care behaviors when undergoing chemotherapy, and keeping informed of research and treatments. Learners showed improvements on 4 knowledge questions, including questions pertaining to: 1) Common long-term or late side effects of treatment (45 and 74% relative increases); 2) Factors related to treatment for AML (26 and 33% relative increases); 3) Factors related to testing for AML (5 and 7% relative increases); and the relationship between AML symptoms and low blood count (1 and 3% relative increases). Although this study is limited to patient and caregiver self-report, educational evaluation results and participant questions indicate that patients and caregivers benefit from online education on AML.
Conclusions: Education on AML specifically catered to patients and their families can yield immediate and sustained gains in knowledge and behavior, which may improve their adherence to treatment, quality of life, and patient outcomes.
Disclosures
No relevant conflicts of interest to declare.
Cognitive and Psychological Side Effects of Antiepileptic Drugs
