Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Center of Health Care Research, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Acta Oncol. 2020 Aug;59(8):967-974. doi: 10.1080/0284186X.2020.1762926. Epub 2020 May 19.
We aimed to analyze preferred and perceived levels of patients' involvement in treatment decision-making in a representative sample of cancer patients. We conducted a multicenter, epidemiological cross-sectional study with a stratified random sample based on the incidence of cancer diagnoses in Germany. Data were collected between January 2008 and December 2010. Analyses were undertaken between 2017 and 2019. We included 5889 adult cancer patients across all cancer entities and disease stages from 30 acute care hospitals, outpatient facilities, and cancer rehabilitation clinics in five regions in Germany. We used the Control Preferences Scale to assess the preferred level of involvement and the nine-item Shared Decision-Making Questionnaire to assess the perceived level of involvement. About 4020 patients (mean age of 58 years, 51% female) completed the survey. Response rate was 68.3%. About a third each preferred patient-led, shared, or physician-led decision-making. About 50.7% perceived high levels, about a quarter each reported moderate (26.0%) or low (24.3%) levels of shared decision-making. Sex, age, relationship status, education, health care setting, and tumor entity were linked to preferred and/or perceived decision-making. Of those patients who preferred active involvement, about 50% perceived high levels of shared decision-making. The majority of patients with cancer wanted to be involved in medical decisions. Many patients perceived a high level of shared decision-making. However, many patients' level of involvement did not fit their preference. This study provides a solid basis for efforts to improve shared decision-making in German cancer care.
我们旨在分析代表性癌症患者样本中患者在治疗决策中的偏好和感知参与水平。我们进行了一项多中心、基于德国癌症诊断发病率的分层随机抽样的横断面研究。数据收集于 2008 年 1 月至 2010 年 12 月。分析于 2017 年至 2019 年进行。我们纳入了来自德国五个地区的 30 家急性护理医院、门诊和癌症康复诊所的所有癌症实体和疾病阶段的 5889 名成年癌症患者。我们使用控制偏好量表评估偏好参与度，使用九项共享决策问卷评估感知参与度。约 4020 名患者（平均年龄 58 岁，51%为女性）完成了调查。回复率为 68.3%。约三分之一的患者更喜欢患者主导、共同或医生主导的决策。约 50.7%的患者感知到高水平，约四分之一的患者报告中等（26.0%）或低（24.3%）水平的共享决策。性别、年龄、关系状况、教育程度、医疗保健环境和肿瘤实体与偏好和/或感知决策有关。在那些希望积极参与的患者中，约 50%的患者感知到高水平的共享决策。大多数癌症患者希望参与医疗决策。许多患者希望参与决策，但许多患者的参与度与他们的偏好不符。本研究为改善德国癌症护理中的共享决策提供了坚实的基础。
