Search

Background— Social media have the potential to offer important benefits for patient education, support, and shared decision making. Despite the proliferation of social media use during the past decade, little is known about the scope and quality of available information, or the purposes that social media sites serve for patient decisional and support needs. Methods and Results— We conducted a mixed method study, including content analysis of social media and principal components analysis analysis of data sites discussing left ventricular assist device treatment for heart failure. This study explored aspects of interactivity, user-friendliness, appeal, medium, purpose, audience, and accuracy of information. Higher levels of interactivity (eg, posting comments) seem to enhance the appeal and usability of available information but also introduce greater potential for inaccuracy and inconsistency. The current lack of oversight into the content and quality of available information constitute a challenge for the reliable use of social media as forums for information-seeking and social network–based support. Conclusions— We conclude that social media outlets constitute a promising source of informational and psychosocial support for patients, caregivers, and candidates, and if used in conjunction with patient-provider dialog, can contribute to informed decision making by facilitating reflection and discussion of personal concerns, values, and informational needs.

Background— How caregivers contribute to positive or negative outcomes for left ventricular assist device (LVAD) patients remains unclear. Our primary study objectives were to (1) identify caregiver support attributes through a retrospective chart review of social workers’ psychosocial assessments for LVAD patients and (2) determine how these attributes associated with patients’ post-LVAD placement mortality and Interagency Registry for Mechanically Assisted Circulatory Support–defined morbidity events. Methods and Results— We retrospectively reviewed and recorded social workers’ clinical assessments of adult patients implanted with durable continuous-flow LVADs as bridge to transplant, destination therapy, or bridge to decision from January 2010 to December 2014. Associations between caregiver characteristics and patient mortality and morbidity events were analyzed using Kaplan–Meier curves and Cox proportional hazards regression. Patient follow-up time was calculated as the time from hospital discharge until the earliest among death with LVAD, transplant, or the last day of the study (December 31, 2015). Patients were censored for death with LVAD at the time of transplant or the last day of the study. A total of 96 LVAD recipients were included in this study. Having a caregiver who understands the severity of the illness and options available to the patient (as determined and documented by the social worker; P =0.01), a caregiver who has identified a backup plan ( P =0.02), and a caregiver who is able to provide logistical support ( P =0.04) significantly mitigated risk of death. The risk of death for an LVAD patient was also significantly lower among those who have at least 1 adult child who lives within 50 miles ( P =0.03) and those who have an extended family who can care for the patient ( P =0.03). The risk of death was 3.1× more likely among patients who live alone compared with those who do not live alone ( P =0.04). No caregiver characteristics were significantly associated with morbidity. Conclusions— This exploratory, hypothesis-generating study suggests that mortality after LVAD placement is impacted by caregiver understanding of patient severity of illness and caregiver presence. This study provides initial evidence to support further work in understanding the associations between caregivers and LVAD patients, as well as interventions that may improve patient outcomes. Clinical Trial Registration— URL: http://www.clinicaltrials.gov . Unique identifier: NCT02248974.