Hemmett Juliya, McIntyre Christopher W
Division of Nephrology, Department of Medicine, Schulich School of Medicine and Dentistry, The University of Western Ontario, London, Ontario, Canada.
Semin Dial. 2017 Jan;30(1):3-5. doi: 10.1111/sdi.12562.
Patient-centered care is critical to the successful management of chronic diseases, such as chronic kidney disease. While a course of treatment may prolong life it may come with a reduced quality of life (QOL). For many patients, the decision to prolong life at the expense of lower QOL is not an obvious choice. Dialysis patients make treatment decisions daily, some of which can be life-altering. Therefore, the need for optimal decision-making may be more pressing in dialysis patients than in many other chronic disease states. Guiding patients through these life-altering decisions requires a fuller understanding of how they view their disease, their treatments, and the consequence of accepting or rejecting the treatments offered to them. We propose a conceptual framework to help us understand decision-making in chronic diseases such as end stage renal disease. We also highlight a need to critically examine how patients make decisions on survival versus QOL and the relationship of their decisions to their illness and treatment beliefs. Understanding the role of patients' belief systems can guide education interventions for medical professionals involved in their care in order to help them develop patient-centered, personalized treatment plans.
以患者为中心的护理对于成功管理慢性疾病（如慢性肾脏病）至关重要。虽然一个疗程的治疗可能会延长生命，但可能会伴随着生活质量（QOL）的下降。对许多患者来说，以降低生活质量为代价来延长生命并非显而易见的选择。透析患者每天都要做出治疗决策，其中一些决策可能会改变生活。因此，与许多其他慢性疾病状态相比，透析患者对最佳决策的需求可能更为迫切。指导患者做出这些改变生活的决策需要更全面地了解他们如何看待自己的疾病、治疗方法以及接受或拒绝所提供治疗的后果。我们提出一个概念框架，以帮助我们理解诸如终末期肾病等慢性疾病中的决策过程。我们还强调有必要批判性地审视患者如何在生存与生活质量之间做出决策，以及他们的决策与疾病和治疗信念之间的关系。了解患者信念系统的作用可以指导参与其护理的医疗专业人员开展教育干预措施，以帮助他们制定以患者为中心的个性化治疗方案。
