Online activity and participation in treatment affects the perceived efficacy of social health networks among patients with chronic illness.

BACKGROUND: The use of online health-related social networks for support, peer-to-peer connections, and obtaining health information has increased dramatically. Participation in an online health-related social network can enhance patients' self-efficacy and empowerment, as they are given knowledge and tools to manage their chronic health condition more effectively. Thus, we can deduce that patient activation, the extent to which individuals are able to manage their own health care, also increases. However, little is known about the effects of participation in online health-related social networks and patient activation on the perceived usefulness of a website across disease groups. OBJECTIVE: The intent of the study was to evaluate the effects and benefits of participation in an online health-related social network and to determine which variables predict perceived site usefulness, while examining patient activation. METHODS: Data were collected from "Camoni", the first health-related social network in the Hebrew language. It offers medical advice, including blogs, forums, support groups, internal mail, chats, and an opportunity to consult with experts. This study focused on the site's five largest and most active communities: diabetes, heart disease, kidney disease, spinal injury, and depression/anxiety. Recruitment was conducted during a three-month period in which a link to the study questionnaire was displayed on the Camoni home page. Three questionnaires were used: a 13-item measure of perceived usefulness (Cronbach alpha=.93) to estimate the extent to which an individual found the website helpful and informative, a 9-item measure of active involvement in the website (Cronbach alpha=.84), and The Patient Activation Measure (PAM-13, Cronbach alpha=.86), which assesses a patient's level of active participation in his or her health care. RESULTS: There were 296 participants. Men 30-39 years of age scored higher in active involvement than those 40-49 years (P=.03), 50-64 years (P=.004), or 65+ years (P=.01). Respondents 20-29 years of age scored higher in perceived usefulness than those 50-64 years (P=.04) and those 65+ years (P=.049). Those aged 20-29 years scored significantly lower on the PAM-13 scale than those aged 30-39 years (P=.01) and 50-64 years (P=.049). Men and women had similar PAM-13 scores (F9,283=0.17, P=.76). Several variables were significant predictors of perceived usefulness. Age was a negative predictor; younger age was indicative of higher perceived usefulness. Active involvement was a positive predictor. There was a negative relationship found between PAM-13 scores and perceived usefulness, as taking a less active role in one's own medical care predicted higher perceived website usefulness. A trend toward higher frequency of website activity was associated with increased perception of usefulness. CONCLUSIONS: Online health-related social networks can be particularly helpful to individuals with lower patient activation. Our findings add information regarding the social and medical importance of such websites, which are gradually becoming an inseparable part of day-to-day chronic disease management in the community.

Patient and Caregiver Insights into the Disease Burden of Myelodysplastic Syndrome.

A diagnosis of myelodysplastic syndrome (MDS) is typically unexpected and can be difficult for patients to grasp. Not only is MDS a complicated disease to understand, which can contribute to stress and anxiety, but it also has an uncertain prognosis, which can be emotionally paralyzing. Not surprisingly, emotional distress and the symptom burden of MDS, including extreme fatigue due to cytopenias, negatively impact a patient's quality of life (QOL). Studies have shown that patient-centered care-including greater physician understanding of the disease burden their patients experience, discussing and establishing agreed-on treatment goals, and including patients in the decision-making process about their care-may help improve patient QOL. To better understand patient and caregiver experiences with MDS and how the disease impacts QOL, a small survey was conducted of patients with MDS or leukemia and their caregivers on an online health network. Among the 30 respondents who completed the survey, four had MDS and one was a caregiver for a patient with MDS. Here we focus on the five MDS respondents and contextualize the findings with personal experiences from a patient and physician perspective. The patient perspective was provided by John Soper, PhD, DABCC, who was diagnosed with MDS in 2019. Dr Soper is a retired board-certified clinical chemist and a member of the MDS Foundation. The physician perspective was provided by Dr Ruben Mesa, Executive Director of the Mays Cancer Center at UT Health San Antonio MD Anderson. The survey responses and the accompanying patient and physician perspectives highlight the importance of open communication between patients and their healthcare provider to better serve those with MDS and improve their QOL.