School of Political Science and Public Administration, Shandong University, Qingdao, China.
Center for Health Preferences Research, Shandong University, Jinan, China.
JAMA Netw Open. 2022 Apr 1;5(4):e228788. doi: 10.1001/jamanetworkopen.2022.8788.
In China, little is known about end-of-life (EOL) care preferences of patients with terminal cancer. Understanding these patients' treatment preferences is needed to improve patient-centered health care, better inform surrogates and medical staff about patient preferences, and enhance the quality of EOL care.
To examine preferences for EOL care among patients with terminal cancer in China.
DESIGN, SETTING, AND PARTICIPANTS: In this survey study, patients older than 50 years who had terminal cancer were randomly selected from medical records at a single hospital in China. Data on patients' EOL care preferences were collected by discrete choice experiment (DCE) from August to November 2018 and were analyzed from October 2020 to March 2021.
The main outcome was patient preferences in EOL care, derived using a mixed logit model. Each DCE scenario described 6 attributes: hospitalization days, life extension, quality of life, adverse treatment events, place-of-death preference, and out-of-pocket costs. The marginal willingness to pay (WTP) in US dollars was estimated from regression coefficients.
Of 188 patients selected for the survey, 183 participated (97.3%). Among the respondents, the mean [SD] age was 61 [8.4] years, and 128 (69.8%) were male. Patients' preferences for moderate increase in survival time, better quality of life, death at home, and lower out-of-pocket costs were significantly associated with their choices between treatment models. Extending life by 10 months (vs 4 months: β, 1.63; 95% CI, 0.81-2.44) and a better quality of life (very good vs poor: β, 1.79; 95% CI, 0.96-2.62) were the most important attributes to patients. The uptake rate for a treatment scenario increased by 61.6% when the quality of life improved from poor to very good, and when life extension increased from 4 months to 10, the uptake rate increased by 57.2%. The uptake increased by 12.5% when the place of death changed from hospital to home. However, it decreased by 31.4% when the costs increased to $21 174. The study found a WTP of $38 854 (95% CI, $19 468-$95 096) to improve quality of life from a poor to a very good level, substantially higher than the WTP for a life extension of 6 months ($35 308; 95% CI, $17 745-$80 279) or 1 year ($27 572; 95% CI, $16 389-$58 027) compared with the baseline scenario of a 4-month extension. Patients were willing to pay $8860 (95% CI, $621-$26 474) to die at home rather than in a hospital.
The findings suggest that in addition to extending life moderately for patients with terminal cancer, improving quality of life during EOL care and supporting home deaths may deserve greater attention. The findings also suggest that physicians and surrogates should ask about patients' care preferences and better inform them of their choices to improve EOL care outcomes.
重要性:在中国,人们对终末期癌症患者的临终关怀偏好知之甚少。了解这些患者的治疗偏好对于改善以患者为中心的医疗保健、更好地向代理人和医务人员告知患者偏好以及提高临终关怀质量是必要的。
目的:调查中国终末期癌症患者对临终关怀的偏好。
设计、地点和参与者:在这项调查研究中,从中国一家医院的病历中随机抽取年龄在 50 岁以上的终末期癌症患者。2018 年 8 月至 11 月通过离散选择实验(DCE)收集患者临终关怀偏好的数据,并于 2020 年 10 月至 2021 年 3 月进行分析。
主要结果和措施:主要结果是使用混合对数模型得出的患者对临终关怀的偏好。每个 DCE 场景描述了 6 个属性:住院天数、生命延长、生活质量、不良治疗事件、死亡地点偏好和自付费用。从回归系数估计了边际意愿支付(WTP)。
结果:在被调查的 188 名患者中,有 183 名(97.3%)参与了调查。在应答者中,平均[SD]年龄为 61[8.4]岁,128 名(69.8%)为男性。患者对适度延长生存时间、提高生活质量、在家中死亡和降低自付费用的偏好与他们在治疗模式之间的选择显著相关。与 4 个月相比,延长生命 10 个月(β,1.63;95%CI,0.81-2.44)和提高生活质量(非常好 vs 差:β,1.79;95%CI,0.96-2.62)是患者最重要的属性。当生活质量从差提高到非常好时,治疗方案的采用率提高了 61.6%,当生命延长从 4 个月增加到 10 个月时,采用率提高了 57.2%。当死亡地点从医院改为家中时,采用率增加了 12.5%。然而,当费用增加到 21468 美元时,采用率下降了 31.4%。研究发现,为了从较差的生活质量提高到非常好的水平,患者愿意支付 38854 美元(95%CI,19468-95096),这大大高于支付 6 个月生命延长(35308 美元;95%CI,17745-80279)或 1 年生命延长(27372 美元;95%CI,16389-58027)的意愿,与 4 个月延长的基线情况相比。患者愿意支付 8860 美元(95%CI,621-26474)来选择在家中而不是在医院死亡。
结论和相关性:研究结果表明,除了为终末期癌症患者适度延长生命外,在临终关怀期间提高生活质量和支持在家中死亡可能值得更多关注。研究结果还表明,医生和代理人应该询问患者的护理偏好,并更好地向他们告知他们的选择,以改善临终关怀结果。