Abstract：
Autosomal dominant polycystic kidney disease (ADPKD) is the most common inherited kidney disease. It has been associated with a significant physical and psychological burden, leading to a reduced quality of life. The purpose of this literature review is to summarize the patient perspective on ADPKD based on the current published literature. A systematic literature review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Publications reporting a patient or caregiver/relative perspective of ADPKD were included. Sources searched included Medline (PubMed), Embase (Ovid), Cochrane Library, and Web of Science from inception to April 2022. This was followed by a subsequent reference and citation search. A total of 1011 articles were identified by the search process, with 28 studies included in the review. An inductive thematic analysis identified six key themes: diagnosis, monitoring, and screening; symptoms; lifestyle and dietary interventions; psychological, physical, and social impact; future planning; and interaction with the health care system. The findings of this review highlight the burden and uncertainty associated with ADPKD from a patient\'s perspective. This impacts patients and their caregivers/relatives at each stage of the patient\'s journey from screening to initiation of renal replacement therapy and future planning.
摘要：
常染色体显性遗传性多囊肾病(ADPKD)是最常见的遗传性肾病。它与巨大的身体和心理负担有关，导致生活质量下降。这篇文献综述的目的是根据目前发表的文献总结患者对ADPKD的看法。根据系统审查和荟萃分析（PRISMA）指南的首选报告项目进行了系统的文献审查。包括报告患者或护理人员/ADPKD相关观点的出版物。搜索的来源包括Medline(PubMed)，Embase(Ovid),科克伦图书馆,和WebofScience从成立到2022年4月。随后进行了参考和引用搜索。通过搜索过程共确定了1011篇文章，28项研究纳入审查。归纳主题分析确定了六个关键主题：诊断，监测,和筛查;症状;生活方式和饮食干预;心理,物理，和社会影响；未来规划；以及与医疗保健系统的互动。这篇综述的结果从患者的角度强调了与ADPKD相关的负担和不确定性。在患者从筛查到开始肾脏替代治疗和未来计划的每个阶段，这都会影响患者及其照顾者/亲属。
