Supported Research

Lay Abstract

Choosing between options to connect to the hemodialysis machine: a study of current practices to promote shared decision-making Background: People living with kidney disease face many decisions. As they approach kidney failure, many must prepare for hemodialysis. One decision related to starting hemodialysis is how to connect to the hemodialysis machine using ‘vascular access’. The two most common forms of vascular access are fistulas and catheters. A fistula is a vein surgically connected to an artery in the arm that is accessed by needles. A catheter is a plastic tube placed in a large vein in the neck that connects directly to the blood-purification system. In the past, fistulas were considered the best form of vascular access. This is because older research showed that people with fistulas lived longer and had fewer complications. More recent studies show that both forms of access have pros and cons. For example, catheters are convenient to patients, but they affect people’s ability to bathe and have higher risk of becoming infected. Fistulas do not have a visible connection outside of the body, but they often need repeated procedures to work properly. We know now that fistulas may not be the best option for all people under all circumstances. Purpose: Instead of a doctor telling the patient which option to choose, patients and their care teams should discuss how each option fits with patients’ preferences and values. This is referred to as ‘shared decision-making’. At this time, we cannot offer appropriate support for shared decision-making about vascular access. This is because we do not know patient, caregiver, and healthcare provider needs to make these decisions together. Our proposed project will clarify what these needs are by studying current vascular access practices, care gaps, and preferences for shared decision-making in kidney care clinics for people preparing for dialysis. Methods: We will use different qualitative research methods to study this issue in four kidney care clinics in Southern Alberta. We will observe kidney clinic visits and speak with patients, their loved ones, and healthcare team about choosing between vascular access options. We will also collect information about what resources, policies, and protocols that participants use in practice when making choices about vascular access. We will review video-recordings and interview transcripts to identify common patterns in: (1) how people make decisions about vascular access, and (2) how support for shared decision-making could be enhanced. Anticipated Outcomes: We will report how decisions about vascular access decisions take place currently. We will also identify ways to support shared decision-making about vascular access in practice. Results from this project will help us to develop resources for patients with kidney disease and their loved ones to use together with their care team as they prepare for hemodialysis. Patient Engagement: This project addresses a top research priority for people living with kidney disease. Two patient partners helped develop this proposal and study materials, including interview questions. They are integral members of our study advisory team and will provide feedback and guidance throughout the project. Patient partners will be included in knowledge translation activities, including summary documents, a stakeholder workshop, and published reports. Relevance to Patients/Community: Our team of researchers, clinicians, patients, and caregivers has expertise and lived experience in the areas of vascular access and kidney care decision making. Our proposed project will provide important information on the aspects of decisions about vascular access that matter to patients and healthcare providers. This information will help us develop a strategy to support shared decision-making and improve care processes for people preparing for hemodialysis. Conclusion: Our study of current practices for choosing between vascular access options (i.e., fistulas and catheters) is an important first step towards shared decision-making. Our research will help individualize care for people living with advanced kidney disease and ensure their voices are heard in important care decisions.