OBJECTIVES: Neurofibromatosis Type 1 plexiform neurofibromas (pNFs) are associated with a variety of symptoms and concerns that affect patients’ quality of life (QOL); yet most research limited in studying pain. This study aimed to provide a more comprehensive understanding of their QOL by reporting their scores on measures from the Quality of Life in Neurological Disorders (Neuro-QoL) and Patient-Reported Outcomes Measurement Information System (PROMIS). These measures selected based on our previous qualitative study results.

METHODS: RESULTS: Patients reported similar social function (M=50.6 and 51.4) and self-efficacy/manage symptoms (M=49.2) to the US general population. yet significant worse than the general population on all other domains, with Anxiety being the worst (M=58.1), followed by Depression (M=56.2), Stigma (M=55.9), Pain Interference (M=55.2), Self-Efficacy/Social Interaction (M=44.8), and Self-Efficacy/Emotion (M=44.9), with rest between 4 and 5 Tscores worse than the norm.

CONCLUSIONS: Results of this study showed patients with pNF experienced significant inferior QOL on numerous domains. Given the incurable life-long characteristics of the pNF, interventions to help patients better cope with pNF are needed.