Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, The Sydney Children's Hospitals Network, Sydney, New South Wales, Australia.
Nephrology (Carlton). 2014 Apr;19(4):234-43. doi: 10.1111/nep.12206.
Patients with early-stage chronic kidney disease (CKD) must make lifestyle modifications and adhere to treatment regimens to prevent their progression to end-stage kidney disease. The aim of this study was to elicit the perspectives of patients with stage 1-4 CKD about their disease, with a specific focus on their information needs in managing and living with CKD and its sequelae.
Patients with CKD stages 1-4 were purposively sampled from three major hospitals in Sydney, Australia to participate in focus groups. Transcripts were thematically analysed.
From nine focus groups including 38 participants, six major themes were identified: medical attentiveness (shared decision-making, rapport, indifference and insensitivity); learning self-management (diet and nutrition, barriers to physical activity, medication safety); contextualizing comorbidities (prominence of CKD, contradictory treatment); prognostic uncertainty (hopelessness, fear of disease progression, disbelief regarding diagnosis); motivation and coping mechanisms (engage in research, pro-active management, optimism, feeling normal); and knowledge gaps (practical advice, access to information, comprehension of pathology results and CKD diagnosis, education for general practitioners).
Patients capacity to slow the progression of CKD may be limited by their lack of knowledge about the disease, its comorbidities, psychosocial influences and their ability to interact and communicate effectively with their health-care provider. Support from a multidisciplinary care team, combined with provision of comprehensive, accessible and practical educational resources may enhance patients' ability and motivation to access and adhere to therapeutic and lifestyle interventions to retard progression of CKD.
患有早期慢性肾脏病 (CKD) 的患者必须改变生活方式并坚持治疗方案，以防止疾病进展为终末期肾病。本研究旨在了解 1-4 期 CKD 患者对其疾病的看法，重点关注他们在管理和应对 CKD 及其后果方面的信息需求。
从澳大利亚悉尼的三家主要医院有针对性地抽取 CKD 1-4 期患者参加焦点小组。对转录本进行主题分析。
在包括 38 名参与者的九个焦点小组中，确定了六个主要主题：医疗关注度（共同决策、融洽关系、冷漠和不敏感）；学习自我管理（饮食和营养、体力活动障碍、药物安全）；共病情况（CKD 突出、治疗矛盾）；预后不确定性（绝望、担心疾病进展、对诊断不相信）；动机和应对机制（积极参与研究、主动管理、乐观、感觉正常）；以及知识差距（实用建议、获取信息、理解病理结果和 CKD 诊断、对全科医生的教育）。
患者减缓 CKD 进展的能力可能受到其对疾病、共病、心理社会影响及其与医疗保健提供者有效互动和沟通能力的知识缺乏的限制。多学科护理团队的支持，加上提供全面、可及和实用的教育资源，可能会增强患者获取和坚持治疗和生活方式干预以减缓 CKD 进展的能力和动力。
