title: Depression among adults with neurofibromatosis type 1: prevalence and impact on quality of life.
abstract: Neurofibromatosis type 1 (NF1) carries a significant psychosocial burden for affected individuals. The objective of this study was to measure the prevalence of depressive symptoms among a large sample of adults with NF1 and to quantify the impact of depressive symptoms on quality of life (QoL). This cross-sectional study used an Internet-based questionnaire to collect data from 498 adults who self-reported as having NF1. Using the Center for Epidemiologic Studies Depression (CESD) scale, 55% of all participants (61% of females and 43% of males) scored above 16, indicating a high likelihood of clinical depression. In a multivariate regression model controlling for demographics and potential confounders, depressive symptoms accounted for 32% of the variance in QoL as measured by the Quality of Life Index. This study is the largest to date and found the highest prevalence of depression compared to prior studies. Our data provide more compelling evidence that individuals with NF1 are at increased risk for psychiatric morbidity and suggest that this population should be routinely screened for depression. Because depression was found to be strongly associated with QoL and accounted for nearly one-third of the variance in QoL, it is likely that effectively treating depression may significantly enhance QoL for individuals with NF1.
authors.affiliation: Department of Neurology and Developmental Medicine, Kennedy Krieger Institute, Baltimore, MD, USA.
authors.forename: J S
authors.initials: JS
authors.lastname: Cohen
authors.affiliation: McKusick Nathans Institute of Genetic Medicine and Division of General Internal Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
authors.forename: H P
authors.initials: HP
authors.lastname: Levy
authors.affiliation: National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA.
authors.forename: J
authors.initials: J
authors.lastname: Sloan
authors.affiliation: Department of Population, Family, and Reproductive Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.|College of Education, Criminal Justice, and Human Services, University of Cincinnati, Cincinnati, MD, USA.
authors.forename: J
authors.initials: J
authors.lastname: Dariotis
authors.affiliation: Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA.
authors.forename: B B
authors.initials: BB
authors.lastname: Biesecker
mesh_terms: D000328:Adult; D000368:Aged; D003430:Cross-Sectional Studies; D003863:Depression / Q000453:epidemiology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009456:Neurofibromatosis 1 / Q000523:psychology*; D015995:Prevalence; D011788:Quality of Life; D057566:Self Report; D012737:Sex Factors; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: depression; neurofibromatosis; psychosocial burden; quality of life