JMIR Publications

ABSTRACT

Background:

Until recently, treatment options were limited for patients with acute myeloid leukemia and myelodysplastic syndrome (AML/MDS) who are ineligible for intensive chemotherapy. Due to rapid progression of the condition, it is difficult to capture what is most important to patients when making treatment decisions. Patients’ needs can be better addressed by gaining a deeper understanding of their perspectives, which is valuable in the decision-making process. The Food and Drug Administration (FDA) recently encouraged the use of social media as a tool to gain insight on patients’ perspectives regarding symptoms experienced and the impacts of their disease.

Objective:

To use disease-specific social media posts by patients with AML/MDS who are ineligible for intensive chemotherapy and their caregivers to capture factors that are most important to this population, and to provide current evidence to inform and characterize these perspectives.

Methods:

Posts by patients with AML/MDS and their caregivers were extracted from publicly available discussions on three large AML/MDS-specific sites. These posts were manually reviewed to only include patients who are ineligible for intensive chemotherapy. A total of 1,443 posts from 220 AML patients/caregivers and 2,733 posts from 127 MDS patients/caregivers met the study inclusion criteria. A qualitative data analysis (QDA) of a sample of 85 patients/caregivers’ posts was conducted to identify themes, and a targeted QDA of posts from 79 users focused on treatment decision discussions. Posts were manually reviewed, and relevant text segments were coded and grouped into categories and overall themes.

Results:

A total of 86% (73 of 85) of users included in the overall QDA had relevant information about the key objectives. The most commonly discussed treatment experience theme was the humanistic burden of AML/MDS in terms of emotional/physical impact and impact on family (86% of users), followed by treatment decisions (56%) and unmet needs (50%). In the QDA of treatment decisions, 60 posts from 45 users contained relevant information. Patients commonly reported the desire to reach specific milestones including birthdays and weddings. They wished for a better quality of life over quantity of life, did not want the risk of suffering from side effects, and expressed a clear preference to be at home rather than in a hospital or care home.

Conclusions:

This study was a novel application of disease-specific social media. It highlighted experiences in the current treatment of AML/MDS including information gaps, patient/caregiver uncertainty, and the importance of understanding patient/caregiver goals and opinions. A clear finding from this research was the importance of reaching certain personal life goals and being at home with family and friends. The analysis showed that patients/caregivers face additional challenges that include humanistic impacts and a lack of information regarding treatment options.