Patient-Centered Insights on Living with Acute Myeloid Leukemia and Its Treatments Using Patient Reported Information Shared Via Social Media

INTRODUCTION: Older patients (≥65 years) with acute myeloid leukemia (AML) have a poorer prognosis and more contentious treatment landscape than younger AML patients. Expectations relating to treatment and survival, and factors influencing treatment decisions are not well understood for older AML patients. Given the lack of published data in this area, this study aimed to review unsolicited, publicly available patient-reported information shared on social networking websites to gain insights from older patients on living with AML and its treatments.

METHODS: Searches were conducted using 2 social networking sources; YouTube^TM (video data) and MacMillan Cancer Support Online Community UK (patient blogs) to identify patient stories of living with AML. Selection criteria included target patient age (approximately 60 years or older: self-reported/researcher-observed), and treatment type (low-intensive treatment/palliative care or chemotherapy). Video/blog data were manually reviewed and content analyzed thematically to address experience of living with AML, perceived benefits/challenges of living longer, perceived expectations/benefits of life-extending therapies, rationale for declining treatments, and the importance of less conventional outcomes such as time spent out of the hospital or clinic.

RESULTS: 29 videos and 30 blogs were selected for in-depth review from 26 individual contributors (13 AML patients, 13 study partners [e.g., partner, child]; patient age range: 59-84 years). Experience of living with AML: key areas of impact reported by patients/study partners included emotional/psychological distress of AML diagnosis, financial implications, and physical effects of living with AML (e.g., fatigue/loss of appetite). Benefits and challenges of living longer: Patient/study partners focused on attaining life milestones, attending family events and limiting disruption to family life irrespective of treatment. Patients on intensive chemotherapy generally reported more positive comments (e.g., ability to return to normal family life, resume work life, being able to travel) than patients on low-intensive treatment/palliative care, who were often resigned to the inevitability of their prognosis. Expectations/benefits to life-extending therapies: Effective therapies that had the potential to delay progression and extend life were of great importance to patients/study partners. Several patients/study partners with limited survival prognosis were preoccupied with identifying new treatments that could improve their prognosis. Benefits of extended survival outweighed potentially severe side effects for patients receiving/contemplating intensive treatments. However, patients on intensive therapy also questioned continued effectiveness of treatments such as chemotherapy. Patients for whom intensive treatment was not an option were primarily concerned with receiving treatments that offered prolonged quality of life and a degree of autonomy. Rationale for declining treatments: Treatment options for all patients were governed by clinically driven factors (e.g., age/comorbidities/tolerability). Key drivers for patient treatment preferences included prior/current treatment experience, tolerability issues, and anticipated daily-life-impacts. Minimizing the treatment burden was an important factor for patients/study partners; patients prioritized life events ahead of accepting treatments with restrictive regimens, and avoided treatments requiring frequent hospital visits in order to minimize the disruption to family life. Importance of less conventional outcomes: Location of treatment centers was a key issue for patients and their families; treatment offered at local centers enabled patients to live a normal family life and minimized burden to their families associated with extensive and frequent hospital stays.

CONCLUSIONS: This study provides valuable and rich information on the patient experience and perceptions of AML and its treatments. Although there were some notable differences in issues raised by patients/partners on low versus high intensive treatment, all patients, irrespective of treatment, were primarily concerned about how their AML and the associated treatments would help or prevent them from leading a normal and independent life.