Objectives

Cerebral cavernous malformation (CCM) affects more than a million Americans but advanced care for symptomatic lesions and access to research studies is largely limited to referral academic centers

Materials and methods

A cohort of CCM patients screened for research studies at an accredited center of excellence for CCM was analyzed. Demographics, lesion location, history of hemorrhage, insurance type and area of deprivation index (ADI) were collected. Primary outcomes were clinical follow-up within a year from initial evaluation, and enrollment and adherence in clinical trials among eligible subjects

Results

A majority (52.8%) of CCM patients evaluated had a high socioeconomic status (SES) (ADI 1-3), and only 11.5% were African American. Patients who had a symptomatic bleed were more likely to follow-up (p=0.01), and those with brainstem lesion were more likely to enroll/adhere in a clinical trial (p=0.02). Rates of clinical follow-up were similar across different ADI groups, insurance coverage and race. Patients who were uninsured/self-paying, and African Americans were more likely to decline/drop from clinical trials (OR 2.4, 95% CI 0.46-10.20 and OR 2.2, 95% CI 0.33-10.75, respectively), but differences were not statistically significant

Conclusions

Access of disadvantaged patients to center of excellence care and research remains limited despite geographic proximity to their community. Patients with lower SES and African Americans are as likely to follow-up clinically, but there were trends of differences in enrollment/adherence in clinical trials. Mitigation efforts should target systemic causes of low access to specialized care among uninsured and African American patients.

中文翻译：

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社会经济学和种族对脑海绵状血管瘤临床随访、试验入组和依从性的影响

 目标

脑海绵状血管瘤 (CCM) 影响超过一百万美国人，但对症状性病变的高级护理和获得研究的机会很大程度上仅限于转诊学术中心

 材料和方法

对在经认可的 CCM 卓越中心筛选进行研究的一组 CCM 患者进行了分析。收集人口统计数据、病变位置、出血史、保险类型和剥夺面积指数（ADI）。主要结局是初始评估后一年内的临床随访，以及合格受试者的临床试验登记和依从性

 结果

大多数 (52.8%) 接受评估的 CCM 患者具有较高的社会经济地位 (SES) (ADI 1-3)，只有 11.5% 是非裔美国人。有症状出血的患者更有可能进行随访（p=0.01），而患有脑干病变的患者更有可能参加/坚持临床试验（p=0.02）。不同 ADI 组、保险范围和种族的临床随访率相似。没有保险/自费的患者和非裔美国人更有可能拒绝/放弃临床试验（分别为 OR 2.4，95% CI 0.46-10.20 和 OR 2.2，95% CI 0.33-10.75），但差异并不存在具有统计显着性

 结论

尽管地理位置靠近社区，弱势患者获得卓越护理和研究中心的机会仍然有限。社会经济地位较低的患者和非裔美国人更有可能进行临床随访，但临床试验的入组/依从性存在差异趋势。缓解措施应针对未参保和非裔美国患者难以获得专门护理的系统性原因。