UC Irvine

The purpose of this study was to explore the Cystic Fibrosis (CF) community’s use of, goals for, and perspective about social media networks, as well as interest in including CF medical professionals within these forums. Understanding the dynamics within these networks is important for medical professionals to better meet patient needs, address gaps in care, and utilize this major support system to improve patient care and wellbeing. Sixty-six individuals in the CF community participated in an anonymous survey circulated through social media. The survey addressed both social media use and individuals’ current CF care teams. Most respondents had positive feelings towards their social media networks, CF care teams, and overall quality of life. Making friends and being part of a community, obtaining medical advice, learning from experiences of others with CF, tracking others’ health, fundraising, and having an outlet were considered important goals of social media use. Respondents felt most supported by their CF care teams in regards to answering medical questions, and least supported emotionally. There is a low level of involvement of medical professionals on these social media platforms, however there were strong variations in respondents’ interest in this involvement. These results support the need for future research into the dynamics of these social media networks and exploration into how medical professionals can best utilize them. These platforms have the potential to positively impact patient engagement, baseline knowledge, expectations for future disease progression, compliance, and psychosocial wellbeing, if we can play to their strengths.