Nota Ingrid, Drossaert Constance H C, Taal Erik, Vonkeman Harald E, van de Laar Mart A F J
Department of Psychology, Health and Technology, University of Twente, PO Box 217, Enschede 7500AE, The Netherlands.
BMC Musculoskelet Disord. 2014 Oct 4;15:333. doi: 10.1186/1471-2474-15-333.
Involvement of patients in decision-making about medication is currently being advocated. This study examined (the concordance between) inflammatory arthritis patients' preferred and perceived involvement in decision-making in general, and in four specific decisions about Disease-Modifying Anti-Rheumatic Drugs (DMARDs). Furthermore, this study examined how patients' involvement is related to satisfaction about decision-making and which factors are related to preferred roles, perceived roles and concordance.
Using a cross-sectional survey, 894 patients diagnosed with Rheumatoid Arthritis, Psoriatic Arthritis or Ankylosing Spondylitis were sent a questionnaire which focused on medical decisions in general and on four specific decisions: (a) starting with a traditional DMARD; (b) starting to inject methotrexate; (c) starting a biological DMARD; and (d) decreasing or stopping a DMARD. For each decision preferred and perceived involvement in decision-making was assessed using the Control Preference Scale. Concordance was calculated by subtracting the scores for perceived role from scores for the preferred role. Furthermore, satisfaction with the decision process and socio-demographic, health-related, patient-related and physician-related variables were assessed.
The response rate was 58%. For all decisions, most patients (59%-63%) preferred Shared Decision-Making (SDM). SDM was perceived frequently (26%-55%) and patients' preferences were met in 54% of the respondents. Yet, in some specific decisions, 26% to 54% of patients would have liked more participation. Perceiving less participation then preferred was associated with less satisfaction with the decision-process, but perceiving more participation than preferred was not. Our results did not reveal any meaningful models to predict preferred or perceived participation in decision-making in general or with reference to specific decisions about DMARDs.
Most arthritis patients prefer to be involved in decisions about their medication and SDM is perceived frequently. Yet, in some specific decisions patient participation can be further improved. Patients especially prefer more participation in decision-making regarding starting a first traditional DMARD, which occurs most commonly in newly diagnosed patients. Whereas perceiving too little participation was associated with decreased satisfaction, perceiving too much participation was not. Therefore, rheumatologists should urge patients to participate in every medical decision.
目前提倡患者参与药物治疗决策。本研究调查了炎性关节炎患者在总体决策以及关于改善病情抗风湿药（DMARDs）的四个具体决策中，其偏好的参与程度与实际感知的参与程度之间的一致性。此外，本研究还调查了患者的参与程度与决策满意度之间的关系，以及哪些因素与偏好角色、感知角色和一致性相关。
采用横断面调查，向894例诊断为类风湿关节炎、银屑病关节炎或强直性脊柱炎的患者发放问卷，问卷重点关注总体医疗决策以及四个具体决策：（a）开始使用传统DMARDs；（b）开始注射甲氨蝶呤；（c）开始使用生物DMARDs；（d）减少或停用DMARDs。对于每个决策，使用控制偏好量表评估偏好的和感知的决策参与程度。通过用偏好角色的得分减去感知角色的得分来计算一致性。此外，还评估了对决策过程的满意度以及社会人口统计学、健康相关、患者相关和医生相关变量。
回复率为58%。对于所有决策，大多数患者（59%-63%）偏好共同决策（SDM）。SDM被频繁感知（26%-55%），54%的受访者的偏好得到满足。然而，在一些具体决策中，26%至54%的患者希望有更多参与。感知到的参与程度低于偏好程度与对决策过程的满意度较低相关，但感知到的参与程度高于偏好程度则不然。我们的结果没有揭示任何有意义的模型来预测总体上或关于DMARDs的具体决策中偏好的或感知的决策参与程度。
大多数关节炎患者希望参与其药物治疗决策，并且SDM被频繁感知。然而，在一些具体决策中，患者的参与程度仍可进一步提高。患者尤其希望在开始使用第一种传统DMARDs的决策中更多地参与，这在新诊断患者中最为常见。虽然感知到的参与程度过少与满意度降低相关，但感知到的参与程度过多则不然。因此，风湿病学家应敦促患者参与每一项医疗决策。
