参与者对自体主导多囊性病长期临床试验的感知
Sneha Amin1, Irene Sangadi1,2, Margaret Allman-Farinelli3
1Michael Stern Laboratory for Polycystic Kidney Disease, Westmead Institute for Medical Research, The University of Sydney, Sydney, Australia.
Kidney medicine
|August 21, 2023
概括
当预期得到满足时,参与者对自身主导性多囊性病 (ADPKD) 临床试验的满意度很高. 试验保留取决于平衡好处与负担,强调需要灵活,以参与者为中心的试验设计.
科学领域:
- 腎臟病學 (nephrology) 是一種醫學專業.
- 临床试验 临床试验
- 患者报告的结果
背景情况:
- 自体主导多囊性病 (ADPKD) 需要对新疗法进行高效的临床试验.
- 长期随机对照试验 (RCT) 是至关重要的,但面临招聘和保留挑战.
研究的目的:
- 在为期3年的ADPKDRCT中调查影响参与者招募和留住参与者的因素.
- 确定参与的动机和继续入学的障碍.
主要方法:
- 使用问卷和半结构面试进行的定性研究,对3年ADPKDRCT的187名参与者进行了半结构面试.
- 分析包括描述性统计数据和面试成绩单的诱导性主题编码.
主要成果:
- 参与者的高满意度 (94%的评分为8+/10) 与满足预期有关.
- 招聘的动机包括利他主义,知识获取和治疗机会.
- 保持支持灵活性 (安排,地点) 和实际援助;负担包括时间损失和繁的测试 (MRI,尿液采集).
结论:
- 当试验期望与经验一致时,参与者的满意度很高.
- 平衡感知到的好处和负担是保留ADPKD试验的关键.
- 未来的试验设计应优先考虑灵活性,低风险干预和非侵入性生物标志物,以提高效率.
相关概念视频
Chronic Kidney Disease I: Introduction
35
Chronic Kidney Disease (CKD) arises when the kidneys progressively lose their ability to function, ultimately leading to end-stage kidney disease (ESKD). At this advanced stage, the kidneys can no longer filter waste or maintain essential body functions, requiring renal replacement therapy (RRT) through dialysis or a kidney transplant for survival.Early-stage chronic kidney disease and detection challengesIn CKD's early stages, symptoms often remain absent because healthy nephrons compensate...
35
Chronic Kidney Disease III: Interprofessional Care
42
Chronic kidney disease (CKD) requires collaborative and comprehensive management. CKD progresses through stages and can lead to end-stage kidney disease (ESKD) if untreated. Interprofessional collaboration and patient education are crucial, enabling patients to manage their health and improve their quality of life.Diagnostic approach for chronic kidney diseaseThe diagnosis of CKD primarily focuses on the glomerular filtration rate (GFR), which assesses kidney function by measuring how well...
42
Chronic Kidney Disease II: Clinical Manifestations
29
Chronic Kidney Disease (CKD) progressively impairs multiple body systems due to the accumulation of uremic toxins, which disrupt cellular functions across various organs.Neurologic symptomsNeurologic symptoms often arise early in CKD, as uremic toxin buildup drives changes in cognitive and motor functions. Patients frequently experience fatigue, headache, confusion, difficulty concentrating, and, in severe cases, seizures. Peripheral neuropathy commonly manifests as burning sensations in the...
29
Acute Kidney Injury III: Clinical Manifestations
29
Acute Kidney Injury (AKI) progresses through distinct clinical phases: the oliguric, diuretic, and recovery phases, each marked by unique manifestations and challenges.Oliguric Phase:The oliguric phase is the initial stage of AKI, typically lasting 10 to 14 days. This phase is marked by a significant reduction in urine output, usually less than 400 mL per day, indicating decreased kidney function. Fluid retention is a prominent feature, leading to symptoms such as edema, hypertension, and...
29
Kidney Transplant III: Nursing Management
39
Postoperative Nursing Management for Kidney Transplant PatientsPostoperative nursing management care includes monitoring the surgical site, encouraging early movement, and promoting lung health through breathing exercises. Nurses also administer prescribed medications like H2-blockers, such as famotidine, or proton pump inhibitors, like omeprazole, to help prevent gastrointestinal ulcers and bleeding. Fungal infections in the mouth and bladder can result from immunosuppressive and antibiotic...
39
Kidney Transplant I: Introduction
29
A kidney transplant is a surgical approach that involves replacing a non-functioning kidney with a healthy one from a donor. This procedure is often a treatment option for end-stage renal disease (ESRD) patients. The method requires careful recipient selection, including evaluating various medical and psychosocial factors. These criteria vary between transplant centers but generally include assessments of the patient's overall health, adherence to medical recommendations, and lifestyle...
29


