Background: Prognostic understanding in advanced cancer patients and their caregivers may have an impact on the delivery of effective care. The aims of this study were to explore prognostic understanding at diagnosis in both patients with advanced lung cancer and their caregivers and to investigate correlates of their understanding.
Subjects, materials, and methods: A total of 193 patients with newly diagnosed advanced lung cancer and their 167 caregivers were enrolled at 16 hospitals in Japan. We assessed their perceptions of prognosis and goals of therapy and examined their associations with their sociodemographic characteristics, clinical status, quality of life, mood symptoms, and the status of disclosure of information by their treating physicians.
Results: One fifth of patients and caregivers (21.7% and 17.6%, respectively) mistakenly believed that the patients' cancer was "completely curable." Substantial proportions of them (16.9% and 10.3%, respectively) mistakenly believed that the primary goal of therapy was to remove all the cancer. Levels of anxiety and depression in both patients and caregivers were significantly higher among those who had accurate understanding of prognosis. In multivariate analyses, inaccurate perceptions of prognosis in patients were associated with sex, better emotional well-being, and lower lung cancer-specific symptom burden. Caregivers' inaccurate perceptions of patients' prognoses were associated with better performance status and better emotional well-being of patients.
Conclusion: Substantial proportions of advanced lung cancer patients and their caregivers misunderstood their prognosis. Interventions to improve their accurate prognostic understanding should be developed with careful attention paid to its associated factors.
Implications for practice: This study demonstrated that substantial proportions of patients with newly diagnosed advanced lung cancer and their caregivers had misunderstandings about their prognosis. Accurate perceptions of prognosis, which are indispensable in the delivery of effective care, were associated with elevated levels of anxiety and depression in both patients and caregivers, warranting psychosocial care and support for them immediately after diagnosis. Inaccurate perceptions of prognosis in patients were associated with better emotional well-being and lower lung cancer-specific symptom burden. Illness understanding in caregivers was associated with patients' physical and mental status. Those findings provide insight into how they obtain accurate illness understanding.
摘要
背景。晚期肺癌患者及其照料者对预后的认知可能影响医疗的有效提供。本研究旨在探讨晚期肺癌患者及其照料者对诊断时的预后认知情况,并研究其相关性
受试者、材料和方法。日本16家医院共有193名近期被诊断为患有晚期肺癌的患者及其 167 名照料者参与本研究。我们评估了他们对预后和治疗目标的认知,并调查了他们与其社会人口学特征、临床状态、生活质量、情绪症状以及主治医师对病情披露情况之间的关系。
结果。五分之一的患者和照料者(分别为21.7%和17.6%)错误地认为,患者所患癌症“完全可以治愈”。他们中的大部分人(分别为16.9%和10.3%)错误地认为,治疗的主要目标是消除所有癌症。在准确了解预后的患者和照料者中,焦虑和忧郁程度显著提高。在多变量分析中,患者对预后的不准确认知与性别、情绪较为健康以及肺癌特异性症状负担较低有关。照料者对患者预后的不准确认知与患者体能状况较好及情绪较为健康有关。
结论。大部分晚期肺癌患者及其照料者对其预后存在误解。应特别留意其相关因素,制定干预措施,以加强他们对预后的准确认知了解。
实践意义
本研究表明,大部分近期被诊断为患有晚期肺癌的患者及其照料者对其预后存在误解。预后的准确认知对于提供有效医疗至关重要,它与患者和照料者的焦虑和沮丧程度提高有关,需要在诊断后能够立即为他们提供社会心理医疗和支持。患者对预后的不准确认知与情绪更为健康以及肺癌特异性症状负担较低有关。照料者对病情的了解与患者的身心状况有关。这些发现有利于他们对患者病情的准确了解程度。
Keywords: Advanced lung cancer; Family caregiver; Illness understanding; Prognostic perception; Psychological distress; Quality of life.
© AlphaMed Press 2018.