DOI: 10.1002/ajmg.a.70356 ISSN: 1552-4825

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

Cecilie Ejerskov, Jens R. M. Jepsen, Anja Krøyer, John R. Østergaard, Mia Aagaard Doherty, Klaus Rostgaard, Henrik Hjalgrim, Hanne Hove, Mette Møller Handrup, John J. Mulvihill, Karoline Doser, Pernille E. Bidstrup, Line Kenborg

ABSTRACT

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.

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