Rood J A J, Nauta I H, Witte B I, Stam F, van Zuuren F J, Manenschijn A, Huijgens P C, Verdonck-de Leeuw I M, Zweegman S
Department of Hematology, VU University Medical Center, Amsterdam, the Netherlands.
Department of Internal medicine, Northwest Clinics, Alkmaar, the Netherlands.
Psychooncology. 2017 Dec;26(12):2040-2047. doi: 10.1002/pon.4414. Epub 2017 Apr 17.
To optimize personalized medicine for patients with hematological malignancies (HM), we find that knowledge on patient preferences with regard to information provision and shared decision-making (SDM) is of the utmost importance. The aim of this study was to investigate the SDM preference and the satisfaction with and need for information among newly diagnosed HM patients and their informal caregivers, in relation to sociodemographic and clinical factors, cognitive coping style, and health related quality of life.
Newly diagnosed patients and their caregivers were asked to complete the Hematology Information Needs Questionnaire, the Information Satisfaction Questionnaire, and the Threatening Medical Situations Inventory. Medical records were consulted to retrieve sociodemographic and clinical factors and comorbidity by means of the ACE-27.
Questionnaires were completed by 138 patients and 95 caregivers. Shared decision-making was preferred by the majority of patients (75%) and caregivers (88%), especially patients treated with curative intent (OR = 2.7, P = .041), and patients (OR = 1.2, P < .001) and caregivers (OR = 1.2, P = .001) with a higher monitoring cognitive coping style (MCCS). Among patients, total need for information was related to MCCS (P = .012), and need for specific information was related to MCCS and several clinical factors. Importantly, dissatisfaction with the information they received was reported by a third of the patients and caregivers, especially patients who wanted SDM (χ = 7.3, P = .007), and patients with a higher MCCS (OR = 0.94, P = .038).
The majority of HM patients want to be involved in SDM, but the received information is not sufficient. Patient-tailored information is urgently needed, to improve SDM.
为优化血液系统恶性肿瘤（HM）患者的个性化医疗，我们发现了解患者在信息提供和共同决策（SDM）方面的偏好至关重要。本研究旨在调查新诊断的HM患者及其非正式照护者的SDM偏好、对信息的满意度和需求，并探讨其与社会人口学和临床因素、认知应对方式以及健康相关生活质量的关系。
要求新诊断的患者及其照护者完成血液学信息需求问卷、信息满意度问卷和威胁性医疗情况量表。通过查阅病历，利用ACE - 27获取社会人口学和临床因素以及合并症信息。
138名患者和95名照护者完成了问卷调查。大多数患者（75%）和照护者（88%）倾向于共同决策，尤其是接受根治性治疗的患者（OR = 2.7，P = 0.041），以及具有较高监测认知应对方式（MCCS）的患者（OR = 1.2，P < 0.001）和照护者（OR = 1.2，P = 0.001）。在患者中，信息总需求与MCCS相关（P = 0.012），特定信息需求与MCCS和若干临床因素相关。重要的是，三分之一的患者和照护者对所获信息不满意，尤其是那些希望进行共同决策的患者（χ = 7.3，P = 0.007），以及MCCS较高的患者（OR = 0.94，P = 0.038）。
大多数HM患者希望参与共同决策，但所获信息不足。迫切需要针对患者量身定制信息，以改善共同决策。
