Department of Medical Psychology, Amsterdam UMC Location University of Amsterdam (N.C.A.V., E.M.A.S, I.H.), Amsterdam, The Netherlands; Quality of Care, Amsterdam Public Health (N.C.A.V, E.M.A.S, B.D.O-P, I.H.), Amsterdam, The Netherlands; Cancer Treatment and Quality of Life, Cancer Center Amsterdam (N.C.A.V., E.M.A.S, H.W.M.L, I.H.), Amsterdam, The Netherlands.
Department of Medical Psychology, Amsterdam UMC Location University of Amsterdam (N.C.A.V., E.M.A.S, I.H.), Amsterdam, The Netherlands; Quality of Care, Amsterdam Public Health (N.C.A.V, E.M.A.S, B.D.O-P, I.H.), Amsterdam, The Netherlands; Cancer Treatment and Quality of Life, Cancer Center Amsterdam (N.C.A.V., E.M.A.S, H.W.M.L, I.H.), Amsterdam, The Netherlands.
J Pain Symptom Manage. 2023 May;65(5):442-455.e2. doi: 10.1016/j.jpainsymman.2023.01.012. Epub 2023 Jan 31.
Prognostic information is considered important for advanced cancer patients and primary informal caregivers to prepare for the end of life. Little is known about discordance in patients' and caregivers' prognostic information preferences and prognostic perceptions, while such discordance complicates adaptive dyadic coping, clinical interactions and care plans.
To investigate the extent of patient-caregiver discordance in prognostic information preferences and perceptions, and the factors associated with discordant prognostic perceptions.
We conducted secondary analyses of a cross-sectional study (PROSPECT, 2019-2021). Advanced cancer patients (median overall survival ≤12 months) from seven Dutch hospitals and caregivers completed structured surveys (n = 412 dyads).
Seven percent of patient-caregiver dyads had discordant information preferences regarding the likelihood of cure; 24%-25% had discordant information preferences regarding mortality risk (5/2/1 year). Seventeen percent of dyads had discordant perceptions of the likelihood of cure; 12%-25% had discordant perceptions of mortality risk (5/2/1 year). Dyads with discordant prognostic information preferences (P < 0.05) and dyads in which patients reported better physical functioning (P < 0.01) were significantly more likely to perceive the one-year mortality risk discordantly.
Physicians should be sensitive to discordant prognostic information preferences and prognostic perceptions among patient-caregiver dyads in advanced cancer care.
预后信息被认为对晚期癌症患者和主要非正式照顾者很重要，可帮助他们为生命末期做准备。然而，患者和照顾者在预后信息偏好和认知方面的不一致程度知之甚少，而这种不一致会使适应的双元应对、临床互动和护理计划变得复杂。
调查患者和照顾者在预后信息偏好和认知方面的不一致程度，并探讨与不一致的预后认知相关的因素。
我们对一项横断面研究（PROSPECT，2019-2021 年）进行了二次分析。来自荷兰 7 家医院的 412 对晚期癌症患者（中位总生存期≤12 个月）及其照顾者完成了结构化调查。
7%的患者-照顾者对治愈的可能性存在不一致的信息偏好；24%-25%对死亡率风险（5/2/1 年）的信息偏好存在不一致。17%的患者对治愈的可能性存在不一致的认知；12%-25%对死亡率风险（5/2/1 年）的认知存在不一致。对预后信息偏好不一致的患者（P<0.05）和报告身体功能更好的患者（P<0.01）更有可能对一年的死亡率风险存在不一致的认知。
在晚期癌症护理中，医生应该对患者-照顾者之间不一致的预后信息偏好和认知保持敏感。
