Evaluating the impact of peer support and connection on the quality of life of patients with familial chylomicronemia syndrome

Abstract

Background: Familial chylomicronemia syndrome (FCS) is a disease caused by impaired lipoprotein lipase function and characterized by chylomicronemia, reduced quality of life (QoL) and risk of pancreatitis. The aim of the current study is to assess if QoL can be improved by patients being connected to other patients. Methods: Respondents (N = 50) categorized into 3 groups (actively connected, passively connected and non-connected) self-reported their current or comparative assessments of QoL before and after connection with FCS-focused support organizations using a customized retrospective web-based survey. Results: Connected respondents showed significantly improved perceptions of overall health, disease severity, motivation to take care of health and emotional well-being (p ≤ 0.05). Any level of connection produced noticeable benefits, but active connection in the form of regular interaction with other patients reported the greatest improvements. Additionally, respondents reported higher levels of satisfaction with their primary treating physician after being connected. The majority of patients (62%) reported joining support groups following referrals from their physicians. Conclusions: Similar to other disease states, connecting with other patients with FCS had a positive impact on aspects of quality of life. Physicians may play a central role in referring their patients with FCS to support groups.

Exploring the impact of paediatric localized scleroderma on health‐related quality of life: focus groups with youth and caregivers

“…In addition, future work is required to better understand the resilience factors, coping mechanisms and family impact in LS, as these were not the focus of this project. Interventions to improve HRQoL should also be explored; formal peer support networks seem promising in other rare disease populations . These programmes could provide assistance in developing ways to answer and respond to intrusive questioning and assist with forming expectations about the disease course and treatment.…”

“…Interventions to improve HRQoL should also be explored; formal peer support networks seem promising in other rare disease populations. 32 These programmes could provide assistance in developing ways to answer and respond to intrusive questioning and assist with forming expectations about the disease course and treatment.…”

PROMIS® and Neuro-QoLTM measures are valid measures of health-related quality of life among patients with familial chylomicronemia syndrome

“…Given the low prevalence of FCS, the extent to which dietary restriction and other components of FCS impact patient functioning is poorly understood [10]. To date fewer than ten known studies have been conducted specifically focusing on symptom burden and HRQOL associated with FCS [11][12][13][14][15][16][17]. The limited data that are available suggest significant burden related to both the disease itself and the management thereof, including major effects on both physical and mental health.…”

Posicionamento Brasileiro sobre Síndrome da Quilomicronemia Familiar – 2023

“…Sabe-se que o suporte social obtido em grupos de pares pode contribuir melhorando a percepção de bem-estar geral e gerar motivação para o exercício da autorregulação. 212 O estudo CONNEC 213 mostra que as pessoas afetadas pela SQF podem se beneficiar ao estabelecer contato com outros portadores da doença. Esse estudo sugere que a participação em grupos afins, seja por meio de leitura de textos, participação em sites e rodas de conversa presencial ou online , interagindo ou apenas observando as narrativas de outros pacientes, pode influenciar positivamente a autopercepção de qualidade de vida, a reavaliação da severidade dos sintomas físicos e a redução da sintomatologia psiquiátrica, além de mitigar o estresse psicossocial.…”

“…Obtaining social support through peer groups is known to help improve the perception of general well-being and promote motivation for self-regulation. 212 The CONNEC study 213 showed that people affected by FCS may benefit from having contact with other people affected by the disease. The study suggests that participating in support groups, whether by reading texts, joining websites and face-to-face or online conversation circles, interacting with or just learning about other patients, positively affects perception of quality of life and reduces perception of symptom severity and psychological distress, in addition to mitigating psychosocial stress.…”