McEntire Alexis, Helm Benjamin M, Landis Benjamin J, Elmore Lindsey R, Wilson Theodore, Wetherill Leah, Ware Stephanie M
Department of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis, IN, USA.
Department of Epidemiology, Indiana University Richard M. Fairbanks School of Public Health, Indianapolis, IN, USA.
J Community Genet. 2021 Oct;12(4):631-641. doi: 10.1007/s12687-021-00545-0. Epub 2021 Aug 13.
Individuals diagnosed with thoracic aortic aneurysm/dissection (TAAD) are given activity restrictions in an attempt to mitigate serious health complications and sudden death. The psychological distress resulting from activity restrictions has been established for other diseases or patient populations; however, individuals with non-syndromic TAAD have not been previously evaluated. Seventy-nine participants completed a questionnaire utilizing the Patient Health Questionnaire (PHQ-9) and Generalized Anxiety Disorder (GAD-7) questionnaires, which assess levels of depression and anxiety respectively. Additionally, quantitative and qualitative questions explored self-reported psychological distress in response to activity restrictions. Individuals who reported higher PHQ + GAD scores had been living with a diagnosis longer than two years (p = 0.0004), were between 35 and 65 years old (p = 0.05), reported not coping well (p = 0.0035), and reported physical activity was "very important" (p = 0.04). Results from individual questions showed that individuals who reported their diagnosis affected them financially were 3.5 times more likely to report "feeling nervous, anxious, or on edge" (CI = [0.81, 15.6], p = 0.094). Qualitative analysis revealed themes that identified participant beliefs regarding distress, ability to cope, hindrances to coping ability, and resources. These results show psychological distress can result from physical activity restrictions in non-syndromic TAAD individuals. Additionally, certain subpopulations may be more susceptible to distress. This is the first study to examine the psychological distress individuals with non-syndromic TAAD experience as a result of prescribed activity restrictions. Genetic counselors and other healthcare professionals can utilize this information to provide more tailored cardiovascular genetic counseling and increase its therapeutic potential for patients.
被诊断患有胸主动脉瘤/夹层(TAAD)的个体被给予活动限制,以试图减轻严重的健康并发症和猝死风险。活动限制所导致的心理困扰在其他疾病或患者群体中已有定论;然而,非综合征性TAAD个体此前尚未得到评估。79名参与者完成了一份问卷,该问卷采用患者健康问卷(PHQ - 9)和广泛性焦虑障碍问卷(GAD - 7),分别评估抑郁和焦虑水平。此外,定量和定性问题探讨了自我报告的因活动限制而产生的心理困扰。报告PHQ + GAD得分较高的个体,其确诊时间超过两年(p = 0.0004),年龄在35至65岁之间(p = 0.05),报告应对能力不佳(p = 0.0035),且报告体育活动“非常重要”(p = 0.04)。单个问题的结果显示,报告其诊断对其经济状况有影响的个体,报告“感到紧张、焦虑或坐立不安”的可能性高出3.5倍(置信区间= [0.81, 15.6],p = 0.094)。定性分析揭示了一些主题,这些主题确定了参与者关于困扰、应对能力、应对能力的障碍和资源的信念。这些结果表明,非综合征性TAAD个体的身体活动限制可能导致心理困扰。此外,某些亚群体可能更容易受到困扰。这是第一项研究非综合征性TAAD个体因规定的活动限制而经历的心理困扰的研究。遗传咨询师和其他医疗保健专业人员可以利用这些信息提供更具针对性的心血管遗传咨询,并提高其对患者的治疗潜力。