Use of Mental Health Services Should Be Encouraged in Tuberous Sclerosis Complex

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Investigators surveyed adults with tuberous sclerosis complex to evaluate their perception of disease severity, presence of anxiety and depression, and the use and barriers toward mental health services.

All healthcare professionals who treat children, adolescents, and adults with tuberous sclerosis complex (TSC) should communicate prognosis and offer guidance to parents, caregivers, and affected individuals on the neuropsychiatric manifestations of the disease and foster a positive outlook regarding the use of mental health services. A cross-sectional, Web-based survey was administered among adults with TSC, with results published in the journal Pediatric Neurology.

Data for the 30-minute survey were collected between November 2017 and February 2018. All participants provided electronic consent before completion of the survey, and all survey responses were anonymous. Eligibility criteria for study inclusion were a diagnosis of TSC, age 18 years or older, and the ability to complete a 30-minute electronic survey. Study participants were recruited from 2 different sources: electronically via emails sent by the Tuberous Sclerosis Alliance and in person at a TSC clinic.

The survey contained 4 main parts: a demographics section (age, sex, ethnicity, occupation, income, type of insurance, and years since TSC diagnosis), a clinical care section, a psychometric section (screening instruments used to measure levels of symptoms of depression [Beck Depression Inventory-II], symptoms of anxiety [Beck Anxiety Inventory], and patients’ perception of disease severity [Brief-Illness Perceptions Questionnaire]), and a perception section, which questioned respondents’ use of and perspective on mental healthcare services.

A total of 69 respondents completed the survey. According to the Beck Anxiety Inventory, Beck Depression Inventory-II, and Brief-Illness Perceptions Questionnaire, the overall study population had mild symptoms of anxiety, minimal depression, and a moderate perception of disease severity. A statistically significant difference was reported between the median depression score for men and women, with men scoring higher than women (P .02).

Overall, 57% (39 of 69) of respondents reported they had received mental health treatment at some point in their lives. Of these individuals, approximately 31% (12 of 39) had not seen a mental health specialist in the past year. In contrast, 56% (22 of 39) of individuals from the treatment group reported that they consulted with a mental health specialist on a regular basis.

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Of those respondents who reported receiving mental health services, the majority either “strongly agreed” or “agreed” that mental health treatment was meeting their needs (65%) and improving their overall mental health (74%). Among the group of 30 individuals who had never previously received any mental health treatment, 23% (7 of 30) believed they had symptoms that could be addressed by a mental health specialist, and 67% (20 of 30) of them either “strongly agreed” or “agreed” that they felt comfortable asking their primary healthcare provider about mental health services. In both the mental health treatment group and the nontreatment group, cost was more often cited as a barrier to accessing mental health resources than stigma (treatment group: cost=51% vs stigma=21%; nontreatment group: cost=27% vs stigma=20%).

The investigators concluded that TSC disease severity had a moderate and a low-moderate relationship with anxiety and depression, respectively. Regardless of prior use of mental health services, respondents had a positive outlook toward the use of such services, the major obstacle being cost.


Mowrey KE, Ashfaq M, Pearson DA, et al. The impact of psychiatric symptoms on tuberous sclerosis complex and utilization of mental health treatment [published online November 3, 2018]. Pediatr Neurol. doi: 10.1016/j.pediatrneurol.2018.10.011