Associations of Attention‐Deficit/Hyperactivity Disorder Symptoms With Quality of Life and Real‐Life Functioning in Adults With Neurofibromatosis Type 1: A Nationwide Questionnaire Study in Denmark

This cross-sectional study investigated associations between screening positive for attention-deficit/hyperactivity disorder (ADHD) and quality of life (QoL), as well as real-life functioning, in 235 adults with neurofibromatosis 1 (NF1). Self-reported data included ADHD symptoms (Adult Self-Report ADHD Scale v1.1), QoL (PedsQL NF1 Module), partner status, and need for daily support, supplemented by registry data on education and employment. Adults screening positive for ADHD (14%) had a mean QoL score that was 16.0 points lower (95% confidence interval [CI]: -20.2 to -11.7) than that of adults who screened negative. Each 1-point increase in inattention or hyperactivity/impulsivity score was associated with a mean decrease in QoL of 0.9 (95% CI: -1.1, -0.7) and 0.5 (95% CI: -0.7, -0.3). Screening positive for ADHD was associated with lower odds of having a medium/long education (odds ratio [OR]: 0.24, 95% CI: 0.10-0.56) and being employed (OR: 0.20, 95% CI: 0.10-0.50), but not with having a partner (OR: 0.73, 95% CI: 0.34-1.56). ADHD was also associated with a greater need for daily support, including physical (OR: 8.7, 95% CI: 3.6-21.1), family-related (OR: 5.7, 95% CI: 2.4-13.3), and psychological (OR: 5.0, 95% CI: 2.2-11.3) support. These results support assessment of ADHD symptoms in adults with NF1 to facilitate timely treatment and care.