Fleming David A, Sheppard Vanessa B, Mangan Patricia A, Taylor Kathryn L, Tallarico Michelle, Adams Inez, Ingham Jane
Center for Clinical Bioethics and Department of Internal Medicine, Georgetown University, Washington, DC, USA.
J Pain Symptom Manage. 2006 May;31(5):407-20. doi: 10.1016/j.jpainsymman.2005.09.002.
This study explored the association between perceptions of health care quality and quality of life in patients with advanced metastatic cancer and their informal caregivers (n=39). Patients' and caregivers' perceptions of health care quality, mental health, health-related quality of life, symptoms, and burden were measured. The key findings included the following: 1) patients' mental health and depression scores correlated with those of caregivers, suggesting that the mental health of patients and their caregivers are associated; 2) patients and caregivers shared similar perceptions regarding health care quality; 3) the presence of depression in caregivers correlated with caregivers being less satisfied with the health care being given to their patients (this correlation did not exist for patients, a finding that may be due in part to the protective buffering effect that caregivers provide their patients as illness progresses); and 4) a modified Primary Care Assessment Survey, originally designed for primary care patients, was a useful measure of health care assessment for both patients and caregivers. These data suggest that patients with advanced disease and their caregivers share similar perceptions and evolve as a "unit of care," and caregivers, as unique and important members of the patient's health care team, are also in need of care. When depressed, caregivers may unilaterally lose trust by becoming less satisfied with the quality of health care being provided to their patients.
本研究探讨了晚期转移性癌症患者及其非正式照料者（n = 39）对医疗质量的认知与生活质量之间的关联。测量了患者和照料者对医疗质量、心理健康、健康相关生活质量、症状及负担的认知。主要研究结果如下：1）患者的心理健康和抑郁评分与照料者的评分相关，这表明患者及其照料者的心理健康存在关联；2）患者和照料者对医疗质量的认知相似；3）照料者存在抑郁与他们对患者所接受医疗服务的满意度较低相关（患者不存在这种关联，这一发现可能部分归因于随着疾病进展照料者为患者提供的保护性缓冲作用）；4）最初为初级保健患者设计的改良版初级保健评估调查，对患者和照料者而言都是评估医疗服务的有效工具。这些数据表明，晚期疾病患者及其照料者有着相似的认知，并作为一个“照护单元”共同发展，而且照料者作为患者医疗团队中独特且重要的成员，也需要得到照护。当照料者抑郁时，他们可能会因对患者所接受医疗服务质量的满意度降低而单方面失去信任。
