McCann Zachary H, Szaflarski Magdalena, Szaflarski Jerzy P
Department of Sociology, University of Alabama at Birmingham, USA.
Department of Sociology, University of Alabama at Birmingham, USA.
Epilepsy Behav. 2021 Sep 29;124:108322. doi: 10.1016/j.yebeh.2021.108322.
Cannabidiol (CBD) trials offer an opportunity to examine social factors that shape outcomes of patients with treatment-resistant epilepsy. Prior research of patients treated with CBD for epilepsy describes financial struggles of these patients/families and the association between socioeconomic status and patient-centered outcomes. However, social determinants of health in this population are still poorly understood, mainly due to data scarcity. This study aimed to establish feasibility of assessing social stress, social support, and religious participation and their associations with outcomes (perceived health, quality of life, and mood) in patients treated with CBD for epilepsy. Data were collected during 2015-2018 through structured face-to face interviews with patients/caregivers in a CBD compassionate access/research program in the southern United States. Adult (ages 19-63; n = 65) and pediatric (ages 8-19; n = 46) patients or their caregivers were interviewed at the time of enrollment in the study. Social stress was assessed with stressful life events, perceived stress, epilepsy-related discrimination, and economic stressors; social support with the Interpersonal Support Evaluation List [ISEL]-12; and religious participation with frequency of religious attendance. The results showed economic stressors to be associated with poor overall health, but no associations were noted between stress, support, and religious participation measures and quality of life or mood. Despite a robust data collection plan, completeness of the data was mixed. We discuss lessons learned and directions for future research and identify potential refinements to social data collection in people with treatment-resistant epilepsy during clinical trials.
大麻二酚（CBD）试验为研究影响难治性癫痫患者治疗结果的社会因素提供了契机。先前针对接受CBD治疗的癫痫患者的研究描述了这些患者/家庭的经济困境以及社会经济地位与以患者为中心的治疗结果之间的关联。然而，由于数据匮乏，该人群的健康社会决定因素仍未得到充分了解。本研究旨在确定评估社会压力、社会支持和宗教参与情况及其与接受CBD治疗的癫痫患者的治疗结果（感知健康、生活质量和情绪）之间关联的可行性。2015年至2018年期间，通过对美国南部一个CBD同情用药/研究项目中的患者/护理人员进行结构化面对面访谈收集数据。在研究入组时，对成年患者（19 - 63岁；n = 65）和儿科患者（8 - 19岁；n = 46）或其护理人员进行了访谈。通过应激性生活事件、感知压力、癫痫相关歧视和经济压力源来评估社会压力；通过人际支持评估量表（ISEL）- 12来评估社会支持；通过宗教活动频率来评估宗教参与情况。结果显示经济压力源与整体健康状况不佳相关，但压力、支持和宗教参与情况的测量指标与生活质量或情绪之间未发现关联。尽管有一个完善的数据收集计划，但数据的完整性参差不齐。我们讨论了经验教训和未来研究方向，并确定了在临床试验中为难治性癫痫患者收集社会数据时可能的改进方法。
