Psychosocial Factors and Well-Being Among Adults With Charcot-Marie-Tooth Disease: A Cross-Sectional Study

• Published in: Rehabilitation psychology 2023-11, Vol.68 (4), p.431-442
• Main Authors: Rule, Payton D., Hill, Patrick L.
• Format: Article
• Language: English
• Subjects: Charcot-Marie-Tooth Disease; Disabilities; Female; Human; Male; Psychosocial Factors; Well Being
• ISSN: 0090-5550; 1939-1544
• DOI: 10.1037/rep0000523

Purpose/Objective: The goal of the current study is to examine the relationships between psychosocial factors and well-being among adults with Charcot-Marie-Tooth (CMT) disease, a progressive neuromuscular disorder. Specifically, we aimed to examine associations between psychosocial factors and sense of purpose as well as the moderating role of sense of purpose on associations between psychosocial factors and two other measures of well-being (life satisfaction and health-related quality of life). Research Method/Design: In 2021, we recruited 263 U.S. adults with CMT (Mage = 60.15 years, 58.56% female, 92.40% White) to take part in a cross-sectional study. Participants were asked to complete an online survey assessing components of well-being as well as various psychosocial factors. Results: Moderate-to-strong associations were found between most psychosocial factors assessed and sense of purpose in individuals with CMT. In addition, sense of purpose moderated the relationship between multiple psychosocial factors and other measures of well-being. Conclusions/Implications: Psychosocial factors may be important to consider when examining well-being among individuals with CMT. Furthermore, sense of purpose may be a beneficial tool for promoting well-being in this population. Impact and Implications This study adds to the literature by investigating well-being among adults with Charcot-Marie-Tooth (CMT) disease, a population that has been underrepresented in psychology research. The results of this study could help inform adaptations to existing programs and resources to help promote well-being among individuals with CMT disease. CMT is a hereditary peripheral neuropathy affecting roughly one in 2,500 people worldwide (Charcot-Marie-Tooth Association, 2021). CMT affects the peripheral nervous system and leads to progressive muscle weakness, decreased balance, fatigue, pain, and gradual loss of physical functioning (Taniguchi et al., 2013). Past research on well-being in people with CMT is very limited; however, studies suggest that people with CMT may have worse mental health and well-being than those without CMT. Multiple studies have found that individuals with CMT experience decreased quality of life in physical, psychological, and social domains compared to the general population (Burns et al., 2010; Taniguchi et al., 2013; Vinci et al., 2005). In addition, those with CMT may have a higher risk for developing depressive symptoms than those without CMT, alt