Background: Patients with cardiovascular disease (CVD) and stroke can experience poor outcomes, including poor quality of life (QOL). Support of CVD and stroke patients is often associated with improved QOL. Support is typically provided ‘face-to-face’ by loved ones who often function as caregivers and need support related to the burden of providing care. Receiving support through an online “virtual community” is novel with promising effects on endpoints, yet it is unclear if participants experience enhanced QOL and support. The American Heart Association/American Stroke Association has developed an online virtual Support Network (SN) dedicated to serving patients, loved ones and caregivers and enabling them to meet others, share their stories, and find and give support. The purpose of this study is to evaluate and determine if patients, loved ones, and caregivers who participate in the SN increase their QOL and perception of support.
Methods: Using a longitudinal matched pre-test/post-test design study, we asked CVD and stroke patients, loved ones, and caregivers to complete an online QOL and support survey at time of the SN network registration and 6 months after. Inclusion criteria included being > 21 years and the ability to read and understand English. The baseline survey included self-reported demographic data, clinical data related to comorbidities, the PROMIS Perception of Support and Global Health Scale. The post test survey additionally examined satisfaction with the SN.
Results: We report here results from the baseline QOL and support surveys along with the 6 months follow up support survey. At baseline the SN had a total of 10, 948 members. We surveyed a total of 1076 participates including 802 patients, 175 caregivers, and 99 loved ones. Most participants were white (73%), female (80%), with a median age range from 50-59, and married (59%). Participants’ QOL was overall found to be good or better (68%).
A statically significant increase of perception for emotional support in having someone to confide in and being listened to was found (p = .03 and .025), while 51% of patients were satisfied or extremely satisfied with the SN, compared to 78% caregivers and 85% loved ones. Most patients (75%), caregivers (85%), and loved ones (73%) were likely to continue participating in the SN, with 68% patients,75% caregivers and 81% loved ones likely to recommend the SN to others.
Conclusions: Virtual networks are an evolving and a useful way to engage people. Understanding whether patients, loved ones, and caregivers perceive support, experience improved QOL after participation in, and are satisfied with a virtual community experience may provide evidence to inform ongoing development of the SN and confirm its value to these individuals. We found significant improvement in support and broad satisfaction with such an experience. More research is needed on the impact of virtual support networks.