Staying Connected Improves Overall Health in FCS Patients

Results from a questionnaire show that individuals living with familial chylomicronemia syndrome (FCS) prove that communication among people in similar situations can improve a patient’s quality of life (QoL).

The results were presented via a poster, “Evaluating the impact of peer support and connection on the quality of life of patients with familial chylomicronemia syndrome,” at the 2018 National Lipid Association (NLA) Scientific Sessions, and report significantly improved perceptions of overall health, disease outlook, and emotional well-being after connecting to other patients or support groups.

Respondents of the survey, all of whom were from either a patient or a caregiver reporting on behalf of a patient, were asked a series of questions about their experiences with FCS, level of interaction with FCS-specific groups, and self-reported assessments of several measures of several QoL measures. Respondents were limited to residents of the United States and Canada, and considered their current QoL living with FCS or comparative assessments of QoL before and after connection with support organizations.

In this study, the levels of connectedness were defined as “passive” and “active” and later expanded to also reflect patients defined as “non-connected.” To be “actively connected” was defined as: regularly takes part in ongoing conversations within the group. Being “passively connected” was defined as: rarely takes part in ongoing conversations with the group. Patients who were “non-connected” had never connected to FCS websites or groups.

Post survey analysis showed noticeable differences in several QoL measures in comparing passively, actively, and non-connected patient experiences. It was demonstrated that connection increased respondents’ motivation to take responsibility for their own health, and more than 3 times as many actively connected respondents reported “high” or “extremely high” motivation after being connected. As connection level increased, respondents reported increased levels of satisfaction with their primary treated physicians.

“Doctors may understand the disease itself, but patients with it understand the pain and struggles associated with it,” read one testimonial featured on the poster. “It makes you feel like a human instead of a statistic.”

A second testimonial said: “This group allows me a voice and freedom to know it’s not just me. I’m not alone. This has incentivized me to take an active role in my health again.”

It was reported that 57% of non-connected respondents reported their lack of connection was to not being aware of disease specific groups, a group not being recommended to them by their primary physician, or not seeking out access to the groups online.

It was concluded in the presentation that the effort required to be actively connected resulted in a range of meaningful benefits compared to those seen by patients labeled passive or non-connected. Additionally, physicians’ overall satisfaction with their patients’ willingness to participate and become more active in taking care of their health increased, too.

For more from the NLA Sessions, follow Rare Disease Report on Facebook and Twitter.

References:

Salvatore V, et al. Evaluating the impact of peer support and connection on the quality of life of patients with familial chylomicronemia syndrome. Presented at: 2018 National Lipid Association (NLA) Scientific Sessions; April 26-29, 2018; Las Vegas, Nevada.