Treatment in AML and MDS Patients Who Are Ineligible for Intensive Chemotherapy: Using Social Media Intelligence to Capture What Really Matters to Patients
Authors: Booth Alison , Bell Timothy J , Halhol Sonia , Pan Shiyu , Welch Verna L , Merinopoulou Evie , Lambrelli Dimitra , Cox Andrew 
Published: October 2019

Abstract
Objectives: Treatment options for patients with AML/MDS who are ineligible for intensive chemotherapy are limited. Due to rapid progression of the condition it is difficult to capture what is most important to patients when making treatment decisions. Social media data is a rich source of information, and the FDA recently encouraged stakeholders to explore the use of social media to capture the patient perspective.[i] This study aimed to capture factors most important to patients ineligible for intensive chemotherapy through using disease-specific social media posts by patients and/or their caregivers. Identifying these factors will give clinicians a better understanding of what is important to their patients when considering their treatment.
Methods: AML and MDS patient/caregiver posts were extracted from publicly available discussions on three large AML/MDS-specific sites. Posts were manually reviewed to only include the experience of patients ineligible for intensive chemotherapy. 1,443 posts from 220 AML patients/caregivers and 2,733 posts from 127 MDS patients/caregivers were included. A targeted search for terms relating to end of life treatment decisions was conducted within the included posts, yielding 83 posts from 40 AML users and 70 posts from 39 MDS users. These posts were manually reviewed, and relevant text segments (discussing why patients wish to live longer and reasons/motives for treatment decisions) were highlighted using a qualitative analysis approach.
Results: Of the reviewed data, 40 posts from 27 AML users and 20 posts from 18 MDS users contained relevant information. A theme important to patients and caregivers was spending time with family and making memories (in 20% of relevant posts). Often reported was the desire to reach family occasions including birthdays, Christmas, anniversaries, and weddings. Quality of life was also an important consideration (in 33% of relevant posts). Many patients expressed a wish to have better quality of life over quantity of life, and did not want the risk of suffering from side effects. Tied into this was the clear preference to be at home rather than in a hospital or care home (in over 22% of relevant posts). To some patients, it was important to try all possible treatment options, and some reported their doctors were supportive of this. However a lack of available treatments was also perceived by some patients as if their doctors give up on treating them too soon.
Discussion: Treatment decisions in patients with AML/MDS are complex and unique to each patient. From this analysis, it is clear being home and spending time with family was associated with a perceived higher level of quality of life for patients and caregivers. Patients and caregivers place high importance on treatment options that provide better perceived QoL over treatments that provide a moderate extension to life expectancy and require hospitalisation. This study highlights the need to consider patient perceptions of QoL and the importance of understanding patient and caregiver goals and opinions to best determine personalised treatment options.
[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].

Disclosures
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.