Li Lucinda, Donlan John, Nurhussien Lina, Horick Nora, Zeng Chengbo, Indriolo Teresa, Armstrong Malia E, Bizup Grace, Dalvi Anushka, Zhu Enya, Diop Michelle S, Mason Nancy, Engel Kirsten G, Rowland Michaela, Kenimer Sara, O'Brien Karen, Liu Annie, Amonoo Hermioni L, Forst Deborah, Traeger Lara, Jacobs Jamie M, Jackson Vicki, Chung Raymond T, El-Jawahri Areej, Ufere Nneka N
Department of Medicine, David Geffen School of Medicine at UCLA, Los Angeles, California, USA.
Department of Medicine, Massachusetts General Hospital, Boston, Massachusetts, USA.
Liver Transpl. 2025 Jul 11. doi: 10.1097/LVT.0000000000000683.
Caregivers play a critical role in supporting patients with decompensated cirrhosis (DC) while often also enduring psychological distress themselves. Despite caregivers' essential role in medical decision-making, no studies have examined the associations of caregiver-hepatologist prognostic communication with caregivers' psychological outcomes. In this cross-sectional study, we examined associations of caregivers' self-reported frequency, adequacy, and quality of prognostic communication from the patients' hepatologist (Prognosis and Treatment Preferences Questionnaire) with their anxiety and depression symptoms (Hospital Anxiety and Depression Scale, HADS) and caregiving burden (Zarit Burden Index-12, ZBI-12) using linear regression adjusted for caregiver age, gender, and relationship to the patient. Between August 2018 and September 2022, we enrolled 127/162 (78%) adult caregivers of patients with DC (median age 59 years old, 62% female, 63% spouses). In total, 52% and 35% of caregivers reported clinically significant anxiety and depression symptoms respectively (HADS subscale ≥8), and 27% reported high caregiving burden (ZBI-12 >20). Over 85% had never participated in prognostic communication with their hepatologists about patients' end-of-life care preferences. Higher frequency of prognostic communication with the patient's hepatologist was associated with lower caregiving burden (β=-4.82, p =0.01). Receipt of adequate information about the patient's prognosis was associated with lower caregiving burden (β=-4.21, p =0.02). Lastly, rating the prognostic communication from the patient's hepatologist as high-quality was associated with lower caregiver anxiety symptoms (β=-2.31, p =0.03). Frequency and adequacy of prognostic communication were not significantly associated with caregivers' anxiety and depression symptoms. Quality of prognostic communication was not significantly associated with caregiving burden or depression symptoms. These findings emphasize the substantial psychological distress and burden experienced by caregivers of patients with DC and highlight prognostic understanding as a potential modifiable target for improving their psychological outcomes.
照顾者在支持失代偿期肝硬化（DC）患者方面发挥着关键作用，而他们自身往往也承受着心理困扰。尽管照顾者在医疗决策中起着至关重要的作用，但尚无研究探讨照顾者与肝病专家之间关于预后的沟通与照顾者心理结果之间的关联。在这项横断面研究中，我们使用针对照顾者年龄、性别以及与患者关系进行调整的线性回归，研究了照顾者自我报告的来自患者肝病专家的预后沟通频率、充分性和质量（预后与治疗偏好问卷）与他们的焦虑和抑郁症状（医院焦虑抑郁量表，HADS）以及照顾负担（ Zarit照顾负担指数 - 12，ZBI - 12）之间的关联。在2018年8月至2022年9月期间，我们招募了127/162（78%）名DC患者的成年照顾者（中位年龄59岁，62%为女性，63%为配偶）。总体而言，分别有52%和35%的照顾者报告有临床显著的焦虑和抑郁症状（HADS子量表≥8），27%的照顾者报告有高照顾负担（ZBI - 12>20）。超过85%的照顾者从未与他们的肝病专家就患者的临终护理偏好参与过预后沟通。与患者肝病专家进行更高频率的预后沟通与更低的照顾负担相关（β=-4.82，p =0.01）。收到关于患者预后的充分信息与更低的照顾负担相关（β=-4.21，p =0.02）。最后，将患者肝病专家的预后沟通评为高质量与照顾者更低的焦虑症状相关（β=-2.31，p =0.03）。预后沟通的频率和充分性与照顾者的焦虑和抑郁症状无显著关联。预后沟通的质量与照顾负担或抑郁症状无显著关联。这些发现强调了DC患者照顾者所经历的巨大心理困扰和负担，并突出了预后理解作为改善他们心理结果的一个潜在可改变目标。
