(PS6-D93) Future Directions for Mental Health and Wellbeing Research Among Adults with Charcot-marie-tooth Disease

Research on mental health and wellbeing among people with physical disabilities has gained popularity in recent years, likely due to the increased recognition of health as more than simply the absence of physical disease. However, wellbeing measures for disability samples often fail to take into account the perspective of those with disabilities. One population that has been underrepresented in mental health and wellbeing research is Charcot-Marie-Tooth disease (CMT), an inherited neuromuscular disorder that leads to progressive muscle weakness and loss of physical functioning (Taniguchi et al., 2013). While CMT affects over 3 million people worldwide (Charcot-Marie-Tooth Association, 2021), past research on psychosocial challenges in people with CMT is very limited. Existent studies do suggest that individuals with CMT may report lower wellbeing and have a higher risk of mental health disorders than those without CMT (Taniguchi et al., 2013; Cordeiro et al., 2014). The present study aimed to characterize the psychosocial challenges experienced by people with CMT that researchers may miss by utilizing typical strategies to capture mental health and wellbeing. We also aimed to provide direction for future research on wellbeing in this underrepresented population in psychology research.   

One hundred fifty-six US adults with CMT took part in an online survey in which they were first asked to complete twelve traditionally employed mental health and wellbeing measures (e.g., sense of purpose, self-rated health, etc.). Participants were then asked for their feedback about what was missing from our study. Specifically, they were asked, “Are there any other obstacles or challenges you face due to your CMT that you feel were not addressed in this survey? If so, please elaborate” and “Is there anything else you would like to note about your experiences living with CMT?” Thematic coding analyses were applied to the free responses to identify psychosocial challenges experienced by individuals with CMT that are not included in commonly utilized measures. Eleven themes were identified: coping with disease progression, worry about disease progression, difficulty obtaining or using medical services or devices, difficulty finding knowledgeable health providers, self-consciousness surrounding CMT, loneliness, lack of understanding from others, systemic discrimination, guilt or worry about passing CMT to offspring, challenges of having co-morbid mental or physical health conditions, and anxiety. These results help identify critical missing factors from the study of mental health and wellbeing within this underserved population and highlights the need for more research attention to these areas. Specifically, future research in individuals with CMT may benefit from assessing the impact of these factors on mental health and wellbeing and how to best assist people with CMT in coping with these challenges.