Electronic Patient-Reported Outcomes in Clinical Kidney Practice (ePRO Kidney)
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 594
- 试验地点
- 4
- 主要终点
- Symptoms - Trajectory of Change
研究概览
简要总结
People living with end-stage kidney disease (ESKD) need dialysis or transplantation in order to stay alive. This illness and treatment significantly impact peoples' health, emotions, work and relationships. To promote person-centred care, healthcare professionals should be asking patients about what matters to them and using this feedback to plan and deliver care. Patient-reported outcome and experience questionnaires (jointly referred to as PROs) allow patients to provide information about their quality of life, symptoms and experiences with care. PROs are increasingly used to help healthcare professionals learn about what is important to patients and the impacts of illness or treatments from patients' point of view. Embedding feedback from patients into routine clinical practice is important in end-stage kidney disease because of the physical and quality of life challenges these patients face when living with kidney failure.
PROs provide vital and often missing information that the healthcare team can use to support patients. However, PROs administered via paper questionnaires have been perceived as cumbersome, difficult to integrate with other health information and do not provide immediate feedback.
In this research, home dialysis patients will have the opportunity to complete electronically administered PROs (ePROs) and healthcare professionals will receive education about how to use PRO information. The goal is to learn how to support healthcare professionals to routinely use this information to inform patient care, and see if this makes a difference in patients' symptoms, person-centred care, quality of life and satisfaction with care.
Learning what matters most to patients is essential for healthcare professionals to provide person-centred care. This research will address the gap in our understanding of how to best use patients' reports in healthcare. Findings of this research may ultimately improve the quality of healthcare for Canadians living with end-stage kidney disease.
详细描述
Objectives:
- Understand the process of supporting clinicians to utilize PROs in multidisciplinary, home dialysis practice.
- Examine to what extent utilization of PRO information is associated with differences in symptoms and person-centred care [primary outcomes], as well as satisfaction with care, utilization of health services, mental health, and QOL [secondary outcomes].
Approach:
To achieve these goals, a mixed methods design of process evaluation will be used to compare two groups: Northern and Southern Alberta Renal Programs, NARP (Edmonton) and SARP (Calgary). In Edmonton (Intervention group), patients and clinicians will be invited to participate in the study. Only patients will be invited to take part in the study in Calgary (Comparison group). The research study will be undertaken collaboratively with a Patient Advisory Committee and knowledge users.
Setting:
研究设计
- 研究类型
- Interventional
- 分配方式
- Non Randomized
- 干预模型
- Parallel
- 主要目的
- Health Services Research
- 盲法
- None
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- 未提供
排除标准
- 未提供
结局指标
主要结局
Symptoms - Trajectory of Change
时间窗: Trajectories of up to 24 months from start of enrollment to study completion
Assessed using the symptoms/problems domain of the Kidney Disease Quality of Life 36-Item Short Form Survey (KDQOL-36). The Symptoms/Problems domain has 12 items, each representing a symptom or side effect of kidney disease based on the past 4 weeks with 5 response items ranging from "Not Bothered at all = 100" to "Extremely Bothered = 0". Min Score = 0; Max score = 100. Higher score indicates better health.
Person-centred Care - Trajectory of Change
时间窗: Trajectories of up to 24 months from start of enrollment to study completion
Assessed using the Patient Assessment of Care for Chronic Conditions (PACIC-20), a patient-reported experience measure on satisfaction with care over the past 6 months. The PACIC-20 is a 20-item survey based on five subscales: (1) patient activation, (2) delivery system design and decision support, (3) goal setting and tailoring, (4) problem-solving and contextual counselling, and (5) follow-up and coordination. Each item is rated on a five-point scale (from "Almost never = 0" to "Almost always = 5") and the subscale and total scores are based on average scores across items. Min score = 0; Max score = 5. Higher scores indicates higher quality of care.
次要结局
- Number of Participants Who Selected "1 - Excellent" on Satisfaction With Care(Up to 24 months from start of enrollment to study completion)
- Quality of Life - Trajectory of Change(Trajectories of up to 24 months from start of enrollment to study completion)
- Mental Health - Trajectory of Change(Trajectories of up to 24 months from start of enrollment to study completion)
- Utilization of Health Services(From study enrollment until completion (up to 24 months))
研究者
Kara Schick-Makaroff
Principal Investigator
University of Alberta