From Radboud Institute for Health Sciences, Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, the Netherlands (CvD, WdG, WA, NS, MD); Radboud Institute for Health Sciences, Department of Nephrology, Radboud University Medical Center, Nijmegen, the Netherlands (JW).
J Am Board Fam Med. 2018 Jul-Aug;31(4):570-577. doi: 10.3122/jabfm.2018.04.170459.
It is unknown what patients in primary care with mild-to-moderate chronic kidney disease (CKD) know, think, and feel about their diagnoses and how they value the information provided. The aim of the study was to explore their knowledge, thoughts, and experiences concerning their CKD and the information given to them.
Qualitative interview study with patients with mild-to-moderate CKD who know their diagnoses and are treated mainly by family physicians.
Four themes arose: CKD literacy, coping with anxiety, prerequisites for self-management, and reciprocity in information provision. The participants filled deficiencies in their CKD knowledge with misconceptions and half-truth about causes, symptoms, and treatment. The anxiety about CKD at the time of diagnosis versus the feeling of irrelevance later on was due to the absence of CKD symptoms and their physicians' minimization of the seriousness of CKD. Participants failed to connect lifestyle and cardiovascular disease with CKD. Not all participants were well informed about the consequences that CKD might have. CKD literacy and willingness to change were both necessary to accept lifestyle changes. Further, the participants felt that it would be helpful when information comes with empathy and is tailored to patients' personal needs.
Patients have various perceptions about their CKD. Exploring these perceptions could help match their needs with better-tailored information. Doctors should be aware that they can deliver inaccurate signals about CKD severity, so that patients fail to realize the potential impact of CKD. This makes them less open to lifestyle changes and improving their self-management.
目前尚不清楚初级保健中患有轻度至中度慢性肾脏病（CKD）的患者对其诊断的了解、想法和感受，以及他们对所提供信息的重视程度。本研究旨在探讨他们对 CKD 和所提供信息的了解、想法和经验。
对患有轻度至中度 CKD 的患者进行定性访谈研究，这些患者了解自己的诊断并主要由家庭医生治疗。
出现了四个主题：CKD 素养、应对焦虑、自我管理的前提条件以及信息提供的互惠性。参与者用对病因、症状和治疗的误解和半真半假来填补 CKD 知识的不足。诊断时对 CKD 的焦虑与后来对 CKD 无关的感觉是由于缺乏 CKD 症状和医生对 CKD 严重程度的淡化。参与者未能将生活方式和心血管疾病与 CKD 联系起来。并非所有参与者都充分了解 CKD 可能带来的后果。CKD 素养和改变的意愿对于接受生活方式的改变都是必要的。此外，参与者认为，当信息带有同理心并针对患者的个人需求进行定制时，这将很有帮助。
患者对 CKD 有不同的看法。探讨这些看法可以帮助满足他们的需求，提供更有针对性的信息。医生应该意识到他们可能会对 CKD 的严重程度发出不准确的信号，从而导致患者未能意识到 CKD 的潜在影响。这使得他们不太愿意接受生活方式的改变和改善自我管理。
