Vascular dissection in women with Turner syndrome.

BACKGROUND: The frequency of ascending aortic dissection in patients with Turner syndrome in the United States remains largely unknown with data surmised from published case reports or case series. Dissection of other vascular structures has only rarely been reported in this patient cohort. Recent European data identified aortic dissection to be a relatively rare event in a group of adult women with Turner syndrome. We sought to evaluate the prevalence of, and risk factors for, vascular dissection in women with Turner syndrome followed in the United States. METHOD: Retrospective review of all adult patients (age > 18 years) with Turner syndrome seen by any medical care provider within 2 medical systems covering a 5 state referral base was performed. Demographic, clinical, surgical and imaging variables of interest were recorded. RESULTS: Vascular dissection occurred in 16 (4.1%) of the 393 adult women and prophylactic aortic replacement occurred in 14 (3.5%). Only 35% of patients were under the care of a cardiologist with the remainder followed exclusively by other care providers. Vascular dissections occurred in the ascending & descending aorta as well as pulmonary artery and cerebral vessels. In addition to bicuspid aortic valve, and prior cardiac surgery, risk factors for vascular dissection included rural residence and lack of ongoing care by a cardiologist. CONCLUSION: Transition to adult cardiology subspecialty care is lacking in patients with Turner syndrome. Aortic dissection is not uncommon. Ongoing interaction with a cardiologist is essential to optimize cardiac outcomes in those with cardiac risk factors and may best be accomplished with centralized multidisciplinary clinics.

Evaluating the decisions of glioma patients regarding clinical trial participation: a retrospective single provider review.

Clinical trial accrual is vital to advancing care. A single study elucidated demographic data correlating with glioma patients' clinical trial enrollment. However, it did not investigate the underlying decision-making process for non-participation. In this study, we seek to understand this key aspect of patient accrual. All notes for glioma patients seen by a single neuro-oncologist from July 2010 to May 2017 were examined for mention of clinical trial offerings. When a trial was declined, the patient's reasoning was recorded along with the following: diagnosis, KPS, extent of resection, age, gender, race, marital status, income group, religion, trial offered at initial visit versus subsequent, and distance from trial site. Of 279 consecutive glioma patients, 88 were eligible for and offered a clinical trial. Fifty-seven accepted (65%), and 31 (35%) declined participation (Fig. 1). Of those offered a clinical trial, patients with glioblastoma (GBM) were significantly more likely to accept (44 out of 57 (77%) vs. 13 out of 57 (23%), p =0.03). After we adjusted for gender and travel distance, GBM was the only significant predictor of clinical trial acceptance, with an odds ratio of 3.18 (95% CI 1.17, 8.61, p =0.02). Reasons cited for non-participation included: travel distance (39%), lack of interest (39%), visit frequency (16%), and fear of randomization (6%). This study clarified for the first time individual glioma patient rationale for non-participation and potential areas for improving enrollment. Allowing off-site treatment centers or telemedicine visits may entice rural patients to participate. Visit frequency should be carefully considered and minimized whenever possible. Further prospective study of rationale for non-participation may improve enrollment over time.