LAS VEGAS — Patients with familial chylomicronemia syndrome who were connected actively or passively through a support group had improved disease outlook, perception of overall health and emotional well-being compared with those who were disconnected, according to data presented at the National Lipid Association Scientific Sessions.
“Patients with [familial chylomicronemia syndrome] have a tough disease course they face for the rest of their lives,” Valerie Salvatore, from Akcea Therapeutics, told Cardiology Today. “Fear of a potentially fatal, acute pancreatitis attack coupled with a lifelong regimen of an extremely restrictive low-fat diet (< 15-20 g daily) is difficult. It is extremely encouraging to know that through knowledge of disease-specific websites and support groups a physician can make a positive impact on a patient’s quality of life by connecting with their patients and encouraging they become connected.”
Researchers analyzed data from 50 patients with familial chylomicronemia syndrome.
Participants completed questionnaires about their experience with familial chylomicronemia syndrome, the effect that the disease has on quality of life, the level of interaction with familial chylomicronemia syndrome-specific groups and demographics.
Participants were categorized by levels of connectedness: actively connected (n = 28; mean age, 32 years; 46% men), passively connected (n = 14; mean age, 42 years; 36% men) and nonconnected (n = 8; mean age, 51 years; 38% men).
Participants in the actively connected group were more likely to be highly or extremely motivated to take care of their health after connecting compared with before connecting (14% to 61%). This was also seen in participants who were passively connected (50% to 86%).
Compared with before connection, actively connected participants were more likely to report good (14% to 21%), very good (0% to 4%) and excellent (0% to 4%) perceptions of overall health. Perceptions of good (43% to 50%) and very good (7% to 21%) overall health also improved in passively connected participants.
Participants who were actively connected also reported less interference of familial chylomicronemia syndrome on stress and anxiety levels (7% to 32%), feeling of self-worth (7% to 37%) and quality of sleep (14% to 29%).
Respondents reported that their primary treating physician’s knowledge of familial chylomicronemia syndrome improved in actively connected and passively connected groups, in addition to the empathy and understanding of the difficulty of managing the disease.
Reasons for participants not connecting in support groups included the lack of use of the platforms necessary to access groups (14%), no knowledge of websites or groups specific to familial chylomicronemia syndrome (29%) and no recommendation by their doctor (14%).
“Great strides have been completed recently with the first study documenting the negative impact of FCS on the lives of patients,” Salvatore said in an interview. “This study supports previous research demonstrating the benefit of patients being connected in many disease states. While patients wait for a treatment for FCS, research that utilizes social interventions known to positively improve patients’ lives should be conducted in this population.” – by Darlene Dobkowski
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: National Lipid Association Scientific Sessions; April 26-29, 2018; Las Vegas.
Disclosure: Salvatore reports she is an employee of Akcea Therapeutics.