Division of Community Internal Medicine, Mayo Clinic, 200 First St SW, Rochester, MN, USA.
Biomedical Ethics Program, Mayo Clinic, Rochester, MN, USA.
J Gen Intern Med. 2022 Apr;37(5):1031-1037. doi: 10.1007/s11606-021-07176-8. Epub 2022 Jan 26.
Prognostic information is key to shared decision-making, particularly in life-limiting illness like advanced chronic kidney disease (CKD).
To understand the prognostic information preferences expressed by older patients with CKD.
Qualitative study of 28 consecutively enrolled patients over 65 years of age with non-dialysis dependent CKD stages 3b-5, receiving care in a multi-disciplinary CKD clinic.
Semi-structured telephone or in-person interviews to explore patients' preference for and perceived value of individualized prognostic information. Interviews were analyzed using inductive content analysis.
We completed interviews with 28 patients (77.7 ± SD 6.8 years, 69% men). Patients varied in their preference for prognostic information and more were interested in their risk of progression to end-stage kidney disease (ESKD) than in life expectancy. Many conflated ESKD risk with risk of death, perceiving a binary choice between dialysis and quick decline and death. Patients expressed that prognostic information would allow them to plan, take care of important business, and think about their treatment options. Patients were accepting of prognostic uncertainty and imagined leveraging it to nurture hope or motivate them to better manage risk factors. They endorsed the desire to receive prognosis of life expectancy even though it may be hard to accept or difficult to talk about but worried it could create helplessness for other patients in their situation.
Most, but not all, patients were interested in prognostic information and could see its value in motivating behavior change and allowing planning. Some patients expressed concern that information on life expectancy might cause depression and hopelessness. Therefore, prognostic information is most appropriate as part of a clinical conversation that fosters shared decision-making and helps patients consider treatment risks, benefits, and burdens in context of their lives.
预后信息是共同决策的关键,尤其是在像晚期慢性肾脏病(CKD)这样的生命有限的疾病中。
了解老年 CKD 患者表达的预后信息偏好。
对 28 名年龄在 65 岁以上、非透析依赖的 CKD 3b-5 期患者进行的定性研究,这些患者在多学科 CKD 诊所接受治疗。
对 28 名患者(77.7±6.8 岁,69%为男性)进行半结构化电话或面对面访谈,以探讨患者对个体化预后信息的偏好和感知价值。使用归纳内容分析法分析访谈。
我们完成了对 28 名患者(77.7±6.8 岁,69%为男性)的访谈。患者对预后信息的偏好各不相同,他们对进展为终末期肾病(ESKD)的风险比对预期寿命更感兴趣。许多人将 ESKD 风险与死亡风险混为一谈,认为在透析和快速下降与死亡之间存在二选一的选择。患者表示,预后信息可以让他们规划、处理重要事务,并思考他们的治疗选择。患者可以接受预后的不确定性,并想象利用它来培养希望或激励他们更好地管理危险因素。他们支持接受预期寿命的预后,即使这可能难以接受或难以讨论,但担心这可能会使其他处于相同情况的患者感到无助。
大多数(但不是全部)患者对预后信息感兴趣,并且可以看到它在激励行为改变和允许规划方面的价值。一些患者表示担心有关预期寿命的信息可能会导致抑郁和绝望。因此,预后信息最适合作为临床对话的一部分,该对话可以促进共同决策,并帮助患者在考虑治疗风险、益处和负担时,将其放在自己的生活背景下进行考虑。