Patient-Centered Insights on Treatment Decision Making and Living with Acute Myeloid Leukemia and Other Hematologic Cancers

Abstract

Expectations relating to treatment and survival, and factors influencing treatment decisions are not well understood in adult patients with acute myeloid leukemia. This study analyzed combined findings from a targeted literature review with patientreported information shared on YouTube to further understand patient perspectives in hematologic cancers and, in particular, acute myeloid leukemia. The targeted literature review included articles concerning patient (aged ≥ 18 years) experiences or perspectives in acute myeloid leukemia or other hematologic cancers. YouTube video selection criteria included patients (aged ≥ 60 years) with self-reported acute myeloid leukemia. In total, 26 articles (13 acute myeloid leukemia-specific and 14 other hematologic cancers, with one relevant to both populations) and 28 videos pertaining to ten unique patients/caregivers were identified. Key concepts reported by patients included the perceived value of survival for achieving personal and/or life milestones, the emotional/psychological distress of their diagnosis, and the uncertainties about life expectancy/prognosis. Effective therapies that could potentially delay progression and extend life were of great importance to patients; however, these were considered in terms of quality-of-life impact and disruption to daily life. Many patients expressed concerns regarding the lack of treatment options, the possibility of side effects, and how their diagnosis and treatment would affect relationships, daily lives, and ability to complete certain tasks. Both data sources yielded valuable and rich information on the patient experience and perceptions of hematologic cancers, in particular for acute myeloid leukemia, and its treatments. Further understanding of these insights could aid discussions between clinicians, patients, and their caregivers regarding treatment decisions, highlight outcomes of importance to patients in clinical studies, and ultimately, inform patient-focused drug development and evaluation.

Outcome-Based Payment Schemes: What Outcomes Do Patients with Cancer Value?

“…For example, McMullen et al [14] used interviews and a survey and found that patients reported severity of adverse events as a deterrent to receiving treatment for advanced non-small-cell lung cancer, whereas the major motivator was the potential to extend life. In another study, which reviewed the literature and patient-reported information shared on YouTube, Crawford et al [15] identified that therapies that could potentially delay progression and extend life were of great importance to patients, particularly in terms of quality-of-life impact and disruption to daily life.…”

Characterising experiences with acute myeloid leukaemia using an Instagram content analysis

“…It is worth noting, we were unable to identify any health providers (individually or part of a health facility) posting during our data extraction period. The content of what patients communicate via social media outside the immediate doctor-patient consult provides an unique viewpoint unhindered by bustling waiting rooms or the interpretation of clinicians, to contextualise patient experience and decision making [7]. In our study, only about 10% of posts were organisational suggesting that Instagram may represent an untapped resource for cancer support communities and awareness campaigns.…”

“…Increasing public awareness through emotional appeal and capitalising on hope as a concept, may increase the number of registered donors to ensure sufficient diversity in the donor pool to meet the patient demand for bone marrow transplant [31,32]. Social media research can complement other research methods: Crawford et al used You-Tube to complement a literature review about the patient experience of haematological malignancies and found that YouTube provided supplementary information that highlighted the multifactorial experiences of patients that may not have been otherwise apparent through traditional research methods [7].…”

“…The differences in user demographics that are seen between platforms (such as age, ethnicity, gender, education or income), lend themselves to being targeted for various health campaigns, health promotions or health research seeking to reach different audiences [5,6]. Social media data collection foreseeably provides large-scale and easily accessible data for patient reported information, particularly when compared with traditional patient-focused data collection methods [7].…”

Qualitative analysis of the roles of physicians and nurses in providing decision support to patients with relapsed or refractory leukemia and malignant lymphoma

“…The American Society of Clinical Oncology (ASCO) has published consensus guidelines for clinicianpatient communication, speci cally recommending that clinicians provide information that is congruent with their patients' interests and intentions while jointly considering their goals for treatment [7].…”