Assessment of the Educational Experience for Patients With Newly Diagnosed Nephrotic Syndrome
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 186
- 试验地点
- 1
- 主要终点
- Stakeholder perspectives about educational experiences of newly-diagnosed Nephrotic Syndrome patients
研究概览
简要总结
The purpose of this study is to learn about patient, caregiver and healthcare worker perspectives on educating patients with newly-diagnosed Nephrotic Syndrome. All patients enrolled in the Contact Registry with Nephrotic Syndrome will be invited via email to participate in this study.
详细描述
The survey included questions addressing the following areas: 1.) Information that is important to know when learning to manage Nephrotic Syndrome. 2.) Preferred resources for the education of patients and caregivers with newly-diagnosed Nephrotic Syndrome. 3.) The time frame required to acquire confidence in the management of Nephrotic Syndrome. 4.) Disease-specific information such as diagnosis, length of disease duration, medications used, need for kidney biopsy, dialysis and/or transplant. 5.) Demographic data such as race/ethnicity and educational background.
The survey data is stored by the Rare Diseases Clinical Research Network's Data Management and Coordinating Center (DMCC) at the University of South Florida. The data is de-identified. Names or other personal health information were not collected. Upon conclusion of the study period, the data will be sent to the NEPTUNE consortium lead at the University of Michigan.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Cross Sectional
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Patient and Patient Caregiver:
- •18 years or older
- •English literate
- •History of Nephrotic Syndrome > 3 months or caregiver of a child diagnosed with Nephrotic Syndrome > 3 months prior to enrollment
- •Informed Consent
- •Healthcare Worker Inclusion Criteria:
- •Age > 18 years
- •English literate
- •Provides medical care for children or adults with Nephrotic Syndrome
- •Informed Consent
排除标准
- •Inability to provide informed consent and complete survey
- •Other criteria as specified by Consortium and based on the data we collect in the Contact Registry
结局指标
主要结局
Stakeholder perspectives about educational experiences of newly-diagnosed Nephrotic Syndrome patients
时间窗: 1 year after the study is closed to enrollment
The outcome measure(s) will be evaluated based on the cross-sectional online questionnaire. The questionnaire is the only study procedure for this online patient contact registry protocol and will be the sole analysis tool for both the primary and secondary outcome measures.
次要结局
- Perspectives of patients/families with healthcare workers regarding educational needs of newly-diagnosed Nephrotic Syndrome(1 year after the study is closed to enrollment)