Zekri Jamal, Karim Syed Mustafa
All authors, AlFaisal University, Riyadh; and King Faisal Specialist Hospital and Research Center, Jeddah, Saudi Arabia.
J Glob Oncol. 2016 Apr 20;2(5):268-274. doi: 10.1200/JGO.2015.001925. eCollection 2016 Oct.
Empowering patients with cancer requires that they be continuously informed about their condition. In some Eastern cultures, this concept is often opposed by caregivers. We aim to compare the extent of disclosure desired by actual and presumed patients with cancer and their relatives in our practice.
Nine questions reflecting possible bad news communication to patients from diagnosis to the end of life were designed to investigate the extent of desired disclosure and were answered by 100 patients (cohort I) and 103 accompanying relatives (cohort II) in an outpatient setting. In addition, 103 public participants attending a family medicine clinic (cohort III) each answered the questions from the perspective of a presumed patient (cohort IIIA) and the perspective of a relative (cohort IIIB). The primary end point was affirmative response to six or more questions (AR ≥ 6), reflecting a preference to be informed of the majority (≥ 67%) of possible bad news.
AR ≥ 6 was reported in 85% of cohort I and 52% of cohort II (χ < .001). On multivariable analysis, AR ≥ 6 showed significant association with being a patient (in cohorts I and II) and having nonmetastatic disease (only in cohort I). In the public cohort, AR ≥ 6 was reported in 91% in cohort IIIA and 63% in cohort IIIB (χ < .001). On multivariable analysis, AR ≥ 6 in cohort III was significantly associated with being a presumed patient and having at least a college education.
Patients desire disclosure of the majority of cancer-related bad news. This is in contrast to the views and requests of relatives. The public participants would also desire similar disclosure if they were to be diagnosed with cancer.
赋予癌症患者知情权要求持续向他们通报病情。在一些东方文化中,这一观念常遭到照料者的反对。我们旨在比较实际癌症患者及其亲属与假定癌症患者及其亲属在我们的医疗实践中期望被告知病情的程度。
设计了九个反映从诊断到生命终结可能向患者传达坏消息的问题,以调查期望被告知病情的程度,100名患者(队列I)和103名陪同亲属(队列II)在门诊环境中回答了这些问题。此外,103名参加家庭医学诊所的公众参与者(队列III)分别从假定患者(队列IIIA)和亲属(队列IIIB)的角度回答了这些问题。主要终点是对六个或更多问题的肯定回答(AR≥6),这反映了希望被告知大多数(≥67%)可能的坏消息。
队列I中85%的患者和队列II中52%的亲属报告AR≥6(χ<0.001)。多变量分析显示,AR≥6与作为患者(队列I和II中)以及患有非转移性疾病(仅在队列I中)显著相关。在公众队列中,队列IIIA中91%的参与者和队列IIIB中63%的参与者报告AR≥6(χ<0.001)。多变量分析显示,队列III中AR≥6与作为假定患者以及至少受过大学教育显著相关。
患者希望被告知大多数与癌症相关的坏消息。这与亲属的观点和要求形成对比。如果被诊断患有癌症,公众参与者也会希望得到类似的信息通报。