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1.
Clin Genet ; 88(5): 425-30, 2015 Nov.
Article in English | MEDLINE | ID: mdl-25534182

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.


Subject(s)
Depression/epidemiology , Neurofibromatosis 1/psychology , Quality of Life , Adult , Aged , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Prevalence , Self Report , Sex Factors , Surveys and Questionnaires , Young Adult
2.
AIDS Behav ; 16(1): 99-107, 2012 Jan.
Article in English | MEDLINE | ID: mdl-21359541

ABSTRACT

Despite long term access to highly active antiretroviral therapy in Brazil and the US, little is known about women's communication with their HIV provider regarding childbearing or the unmet need for reproductive counseling. We utilized identical survey questions to collect data from HIV-infected women of reproductive age in Rio de Janeiro (n = 180) and Baltimore (n = 181). We conducted univariate analyses to compare findings between samples of women and multivariate logistic regression to determine factors associated with childbearing desires, childbearing intentions, and provider communication among the combined sample of women (n = 361). Over one-third of women in Rio de Janeiro and nearly one-half of women in Baltimore reported the desire for future childbearing. Nevertheless, the majority of women in clinical care had not discussed future childbearing with their HIV provider. Even in countries with an advanced approach to HIV care, we found low and inadequate communication between providers and female patients about childbearing.


Subject(s)
Counseling , HIV Infections/psychology , Physician-Patient Relations , Reproductive Behavior , Adolescent , Adult , Baltimore , Brazil , Communication , Cross-Cultural Comparison , Cross-Sectional Studies , Female , Fertility , HIV Infections/diagnosis , Health Services Needs and Demand , Humans , Intention , Interviews as Topic , Multivariate Analysis , Preconception Care , Pregnancy , Socioeconomic Factors , Young Adult
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