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.
Alison BoothTimothy BellSonia HalholShiyu PanVerna L WelchEvie MerinopoulouDimitra LambrelliAndrew CoxPublished in: Journal of medical Internet research (2019)
This study was a novel application of disease-specific social media. It highlighted experiences in the current treatment of AML and MDS, including information gaps, patient/caregiver uncertainty, and the importance of understanding patients'/caregivers' 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, including humanistic impacts and a lack of information regarding treatment options.
Keyphrases
- social media
- health information
- acute myeloid leukemia
- end stage renal disease
- data analysis
- newly diagnosed
- peritoneal dialysis
- prognostic factors
- palliative care
- mental health
- case report
- squamous cell carcinoma
- healthcare
- public health
- systematic review
- patient reported outcomes
- radiation therapy
- acute lymphoblastic leukemia