Objectives: For patients with AML/MDS who are ineligible for intensive chemotherapy, prognosis is poor and effective treatment options are limited, often leading to unmet medical needs in this population. A deeper understanding of the patient perspective in this population is valuable to inform decision making and better address patients' needs. The FDA encourages the use of social media to shed light on patients' perspectives regarding the symptoms and impacts of their disease, stressing the opportunity to inform medical product development and enhance regulatory decision making.[i] This study aimed to use social media data to identify self-reported barriers to treatment, and capture the patient/caregiver understanding of the condition and prognosis in AML/MDS patients ineligible for intensive chemotherapy.

Methods: AML and MDS patient/caregiver posts were extracted from publicly available discussions on three large AML/MDS specific forum sites. User posts were manually reviewed to only include the experience of patients ineligible for intensive chemotherapy. A total of 1,443 posts from 220 AML patients/caregivers and 2,733 posts from 127 MDS patients/caregivers were included. A manual qualitative review of a sample of 80 AML patients/caregivers and 5 MDS patients/caregivers' posts was conducted. Hypothesis coding was used to develop a coding dictionary based on key themes and open coding was used to incorporate additional themes, codes, and sub-codes inductively. Relevant content was coded, grouped into categories and overall themes.

Results: Of the 85 user posting histories reviewed, 73 (86%) contained relevant information about the stated key objectives: 41 (56%) of users discussed factors relating to treatment decisions and 37 (51%) discussed unmet needs. The most common reasons for why the patient received no treatment were: the patient could not cope with chemotherapy due to co-morbidities or poor heath (31%), old age (26%), lack of effective available treatment options (18%) and the risk of side effects (15%). Other reasons included wanting to travel and adverse events. The most commonly reported unmet needs were: lack of/no treatment options (23%), lack of information about prognosis and deterioration (18%), lack of information about treatment (13%), lack of understanding about the condition (8%) and a lack of support and information from doctors (8%). Other unmet needs discussed included delayed diagnosis, treatment effectiveness, and lack of family support.

Discussion: The need for more effective treatments in this population is known. However, this analysis shows patients/caregivers also face additional challenges. The discussion surrounding lack of information about prognosis, deterioration and treatment suggest there is a communication barrier between patients/caregivers and clinicians. Patients/caregivers expressed that they did not receive adequate information about these topics. It is not possible to determine whether the information was not given or whether patients/care givers failed to understand information that was given. Clinicians need ensure these topics are discussed, and delivered in a manner comprehensible for patients/caregivers to help patients make more effective treatment decisions. Furthermore, a greater understanding of AML and its symptoms is required to potentially allow for earlier diagnosis.

[i] United States Food and Drug Administration (FDA). June 2018. Patient-Focused Drug Development: Collecting

Comprehensive and Representative Input Guidance for Industry, Food and Drug Administration Staff, and Other Stakeholders. Available from: https://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM610442.pdf [accessed July 24, 2018].


Booth:Evidera: Employment. Bell:Pfizer: Employment, Equity Ownership. Halhol:Evidera: Employment. Pan:Evidera: Employment. Welch:Pfizer: Employment, Equity Ownership. Merinopoulou:Evidera: Employment. Lambrelli:Evidera: Employment. Cox:Evidera: Employment.

Author notes


Asterisk with author names denotes non-ASH members.

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