Quality of Life in Organ Transplant Recipients Participating in an Online Transplant Community

BACKGROUND: The PatientsLikeMe Organ Transplants online community allows patients to share detailed health information for research. OBJECTIVES: The objectives of our study were to describe and contrast data collected through an online community with the broader organ transplant population. METHODS: Quantitative data were examined with respect to basic demographic characteristics and quantitative data including treatment, symptoms, side effects, and the PatientsLikeMe Quality of Life (PLMQOL) scale. Qualitative data including forum discussion posts and treatment evaluations were examined to support future development of standardized questions that could be added to the platform. Online data were compared with US national registry data from the United Network for Organ Sharing (UNOS). RESULTS: Within 30 days of account creation, 1,924 single-organ transplant patients provided spontaneous, patient-reported data in the form of 915 reported symptoms, 938 treatment episodes, and 1,215 PLMQOL assessments. Relative to patients in the UNOS registry, online participants were more likely to be female, younger, and white. Lung transplant patients had worse quality-of-life scores than other organs. Average organ transplant quality-of-life scores were most similar to those of HIV patients, faring better than patients with epilepsy, fibromyalgia, mood disorders, Parkinson’s disease, multiple sclerosis, or ALS. Site users generated 2,169 posts to 346 unique topic threads in the transplants forum. CONCLUSIONS: Organ transplant patients are willing to report detailed health data through online communities across key domains—symptoms, treatment effects, and generic quality of life—that constitute the essential core of patient-reported outcomes. Patient-reported outcomes captured online have the potential to accelerate learning about patient experiences but suffer methodological challenges that must be overcome to maximize their utility.