Mathias Lasgaard

AIM: Our clinical observations raised concern that teenagers and young people with neurofibromatosis type 1 (NF1) might feel lonely and we decided to investigate their experiences and compare them with unaffected siblings. We also assessed predictive factors of loneliness.

METHODS: We evaluated 60 NF1 patients aged 17 (±3.1) years and 23 siblings aged 17 (±2.9) years with a self-report questionnaire that assessed loneliness, depression, shyness, self-esteem, social support, bullying and difficulties making friends. Objective assessments of NF1 disease severity and visibility and somatic NF1-related and social support-related variables were carried out. Multiple linear regression analysis was performed.

RESULTS: Of the 60 patients with NF1, 11 (18%; CI: 8-28%) said that they felt lonely often or always and felt a higher degree of loneliness, but none of the siblings said that they felt lonely. Predictors of loneliness were depression, shyness, bullying, self-perceived conception of illness burden and a low level of social support from friends.

CONCLUSION: Teenagers and young adults with NF1 experienced a higher prevalence and higher degree of loneliness than siblings of NF1 patients. As loneliness affects social, affective and cognitive functions, increased attention on loneliness and the predictive factors described in this study are required.