Parekh Nimisha K, Shah Shamita, McMaster Kristin, Speziale Alissa, Yun Laura, Nguyen Douglas L, Melmed Gil, Kane Sunanda
University of California Irvine (Nimisha K. Parekh, Kristin McMaster, Douglas L. Nguyen).
Oschner Clinic (Shamita Shah).
Ann Gastroenterol. 2017;30(1):89-95. doi: 10.20524/aog.2016.0084. Epub 2016 Sep 6.
While previous studies have evaluated caregivers' quality of life (QOL), burnout, and stress amongst across a variety of chronic illnesses, few such studies have been related to inflammatory bowel disease (IBD).
Caregivers accompanying adult patients with IBD at 6 tertiary centers were enrolled. They completed self-administered surveys related to QOL and burden, including the QOL scale, Zarit Burden Interview (ZBI), and Brief COPE.
Of the 200 consecutive caregivers asked to participate, 162 (81.0%) enrolled and completed the survey. A total of 43.8% caregivers reported having a high level of burden as measured by the ZBI. Factors predictive of a high burden included female gender, younger age of caregiver, household income <$30,000, having more than one dependent in the household, caring for a patient with active disease and higher disease severity, and a personal history of psychiatric illness. Over one third of the caregivers reported a maladaptive coping pattern. The caregiver factors predictive of maladaptive coping skills included male gender, lack of involvement in a support group, a personal history of psychiatric illness, and living in a different household from the patient.
A large proportion of caregivers of IBD patients experience a high level of caregiver burden and reduced QOL. Participation in religious/spiritual activities and support groups appeared to reduce perceived caregiver burden and improve QOL. This study suggests there is an unmet need to address the caregiver burden of adult IBD patients.
虽然先前的研究评估了照顾者在各种慢性病中的生活质量（QOL）、倦怠和压力，但很少有此类研究涉及炎症性肠病（IBD）。
招募了在6个三级中心陪伴成年IBD患者的照顾者。他们完成了与生活质量和负担相关的自我管理调查，包括生活质量量表、扎里特负担访谈（ZBI）和简易应对方式问卷（Brief COPE）。
在连续邀请参与的200名照顾者中，162名（81.0%）登记并完成了调查。共有43.8%的照顾者报告称，根据ZBI测量，他们的负担水平较高。预测高负担的因素包括女性、照顾者年龄较小、家庭收入低于30,000美元、家中有不止一名受抚养人、照顾患有活动性疾病且疾病严重程度较高的患者以及有精神疾病个人史。超过三分之一的照顾者报告有适应不良的应对模式。预测适应不良应对技能的照顾者因素包括男性、未参与支持小组、有精神疾病个人史以及与患者不住在同一家庭。
很大一部分IBD患者的照顾者经历着高水平的照顾者负担和生活质量下降。参与宗教/精神活动和支持小组似乎可以减轻照顾者的感知负担并改善生活质量。这项研究表明，解决成年IBD患者照顾者负担的需求尚未得到满足。
