Whisenant Meagan, Snyder Stella, Weathers Shiao-Pei, Bruera Eduardo, Milbury Kathrin
Department of Behavioral Science, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.
Department of Psychology, School of Science, Indiana University-Purdue University at Indianapolis, Indianapolis, IN, USA.
J Patient Rep Outcomes. 2024 Jul 17;8(1):74. doi: 10.1186/s41687-024-00726-8.
Illness-related communication and depressive symptoms within families may play an important role in caregivers' ability to accurately understand patients' symptom burden. We examined the associations between these psychosocial factors and symptom accuracy in patients with glioma and their family caregivers.
Patients and caregivers (n = 67 dyads) completed measures of depressive symptoms (CES-D), illness communication (CICS), and QOL (SF-36). Patients reported on their own cancer-related symptoms (MDASI-BT) while caregivers reported on their perception of the patients' symptoms (i.e., proxy reporting). Paired t-tests and difference scores were used to test for agreement (absolute value of difference scores between patients and caregiver proxy symptom and interference severity reports) and accuracy (caregiver underestimation, overestimation, or accurate estimation of patient symptom and interference severity).
Clinically significant disagreement was found for all means scores of the MDASI-BT subscales except for gastrointestinal symptoms and general symptoms. Among caregivers, 22% overestimated overall symptom severity and 32% overestimated overall symptom interference. In addition, 13% of caregivers underestimated overall symptom severity and 21% of caregivers underestimated overall symptom interference. Patient illness communication was associated with agreement of overall symptom severity (r=-0.27, p = 0.03) and affective symptom subscale (r=-0.34, p < 0.01). Caregivers' reporting of illness communication (r=-0.33, p < 0.01) and depressive symptoms (r = 0.46, p < 0.0001) were associated with agreement of symptom interference. Caregiver underestimating symptom severity was associated with lower patient physical QOL (p < 0.01); caregiver underestimating symptom interference was associated with lower patient physical QOL (p < 0.0001) and overestimating symptom interference was associated with lower patient physical QOL (p < 0.05). Patient and caregiver mental QOL was associated with caregiver underestimating (p < 0.05) and overestimating (p < 0.05) symptom severity.
The psychosocial context of the family plays an important role in the accuracy of symptom understanding. Inaccurately understanding patients experience is related to poor QOL for both patients and caregivers, pointing to important targets for symptom management interventions that involve family caregivers.
家庭中与疾病相关的沟通及抑郁症状可能在照顾者准确理解患者症状负担的能力方面发挥重要作用。我们研究了这些心理社会因素与神经胶质瘤患者及其家庭照顾者症状准确性之间的关联。
患者和照顾者（n = 67对）完成了抑郁症状（CES-D）、疾病沟通（CICS）及生活质量（SF-36）的测评。患者报告自身与癌症相关的症状（MDASI-BT），而照顾者报告其对患者症状的感知（即代理报告）。采用配对t检验和差异分数来检验一致性（患者与照顾者代理症状及干扰严重程度报告之间差异分数的绝对值）和准确性（照顾者对患者症状及干扰严重程度的低估、高估或准确估计）。
除胃肠道症状和一般症状外，MDASI-BT各子量表的所有均值分数均存在具有临床意义的不一致。在照顾者中，22%高估了总体症状严重程度，32%高估了总体症状干扰。此外，13%的照顾者低估了总体症状严重程度，21%的照顾者低估了总体症状干扰。患者的疾病沟通与总体症状严重程度的一致性（r = -0.27，p = 0.03）及情感症状子量表的一致性（r = -0.34，p < 0.01）相关。照顾者对疾病沟通的报告（r = -0.33，p < 0.01）及抑郁症状（r = 0.46，p < 0.0001）与症状干扰的一致性相关。照顾者低估症状严重程度与患者较低的身体生活质量相关（p < 0.01）；照顾者低估症状干扰与患者较低的身体生活质量相关（p < 0.0001），而高估症状干扰与患者较低的身体生活质量相关（p < 0.05）。患者和照顾者的心理生活质量与照顾者低估（p < 0.05）和高估（p < 0.05）症状严重程度相关。
家庭的心理社会背景在症状理解的准确性方面起着重要作用。对患者体验的不准确理解与患者和照顾者的低生活质量相关，这为涉及家庭照顾者的症状管理干预指出了重要目标。
