Psychological distress in adults with neurofibromatosis type 1:a longitudinal study,Psychische Belastung von Erwachsenen mit Neurofibromatose Typ 1: Eine Längsschnittstudie

Neurofibromatosis type 1 (NF1) is a rare genetic disorder with an autosomal dominant inheritance. It is a chronic condition that affects mostly the skin and causes it to grow multiple tumors and also affects the nervous system. The clinical picture is complex with highly variable symptoms and clinical severity. This study explores the psychological distress in 129 adult patients with NF1. It turned out that adults with NF1 have a higher level of psychological distress compared to the general population. The psychological distress is stable within a year. Physicians treating patients with NF1 should consider the psychological distress in NF1 patients. Psychotherapy, psychiatric treatment and psychosocial offers are therefore essential.