Using Social Media to Uncover Treatment Experiences and Decisions in Patients With Acute Myeloid Leukemia or Myelodysplastic Syndrome Who Are Ineligible for Intensive Chemotherapy: Patient-Centric Qualitative Data Analysis (Preprint)

• DOI: 10.2196/preprints.14285
• Publication Date: 2019-04-10T09:16:01Z
• Authors: Alison Booth; Timothy Bell; Sonia Halhol; Shiyu Pan; Verna Welch; Evie Merinopoulou; Dimitra Lambrelli; Andrew Cox
• Keywords: Data Analysis; Male; Original Paper; Decision Making; 3. Good health; Leukemia, Myeloid, Acute; 03 medical and health sciences; 0302 clinical medicine; Myelodysplastic Syndromes; Quality of Life; Humans; Female; Social Media; Qualitative Research

<sec> <title>BACKGROUND</title> Until recently, treatment options were limited for patients with acute myeloid leukemia and myelodysplastic syndrome (AML MDS) who are ineligible intensive chemotherapy. Owing to the condition’s rapid progression, it is difficult identify what most important when making decisions. Patients’ needs can be better addressed by gaining a deeper understanding of their perspectives, which valuable in decision-making process. The Food Drug Administration recently encouraged use social media as tool gain insight on patients’ perspectives regarding symptoms experienced impacts disease. </sec> <title>OBJECTIVE</title> This study aimed disease-specific posts AML or MDS chemotherapy caregivers capture factors they feel important, provide current evidence inform characterize these perspectives. <title>METHODS</title> Posts extracted from publicly available discussions 3 large AML- MDS–specific sites. These manually reviewed only include A total 1443 220 patients/caregivers 2733 127 met inclusion criteria. qualitative data analysis (QDA) sample 85 patients’/caregivers’ was conducted themes, targeted QDA 79 users focused decision discussions. reviewed, relevant text segments coded grouped into categories overall themes. <title>RESULTS</title> Eighty-six percent (73/85) had information about key objectives. commonly discussed experience theme humanistic burden terms emotional/physical impact family (86%, 63/73 users), followed decisions (56%, 41/73) unmet (50%, 37/73). In decisions, 60 45 contained information. Patients reported desire reach specific milestones, including birthdays weddings. They wished quality life over quantity life, did not want risk suffering side effects, expressed clear preference at home rather than hospital care home. <title>CONCLUSIONS</title> novel application media. It highlighted experiences MDS, gaps, patient/caregiver uncertainty, importance goals opinions. finding this research reaching certain personal being friends. showed that face additional challenges, lack options.