Addressing the educational needs of patients from marginalized populations on acceptance of less than ideal deceased donor kidneys

Study Lead

Marie-Chantal Fortin

CHUM

Overview

Background

Kidney transplantation is the best treatment for patients with end stage kidney failure. There is however a gap between the number of patients waiting for a transplant and the number of organs available leading to death of patients. Meanwhile, there are numerous deceased donor kidneys which are not used and discarded. In the US, it is estimated that around 1 out of 5 deceased donor kidneys are discarded. Most of the discarded kidneys are less than ideal since the deceased donor had medical conditions such as high blood pressure or diabetes. However, using these less than ideal kidneys for selected patients could be a novel strategies to increase access to kidney transplantation.

We have shown in previous studies that patients support the use of less than ideal kidney and that shared-decision making is important for patients and transplant professionals in the decision to accept or decline a deceased donor offer. Shared-decision making is a process where both the healthcare providers and patients participate in the decision making. However, patients require educational tool to provide clear information to engage in this decision-making process. Discussion and education about less than ideal kidneys that lack cultural sensitivity could contribute to mistrust in the allocation process. It is therefore of paramount importance to give the opportunity to the patients from marginalized populations to identify methods to develop educational resources tailored to their needs and realities.

Purpose of the study:

In this study, we aim to capture patients’ and caregivers’ perspectives from marginalized populations by race and ethnicity on less than ideal kidneys and their education needs.

Methods:

We will first conduct a literature review on the existing educational tools developed for patients from marginalized populations. We will conduct individual interviews and focus groups with kidney transplant candidates and caregivers from different ethnic groups (Black, Asian, South-Asian and Indigenous) about their perspectives on less than ideal kidneys and their education needs. The research will be conducted after community consultations. Our research will also follow the principles of OCAP (ownership, control, access and possession).The content of the interviews will be analyzed, and the results will be used to develop educational tools that will be translated into different languages. Participants will be invited to review the developed educational tools.

Anticipated outcomes:

This research project will provide a new educational tool that will help patients to participate in the decision-making process to accept or not a less than ideal deceased donor kidneys.

Patient engagement:

We will engage with patients from different marginalized populations to be part of the research team. They will take part in the different steps of the research study: design, data collection, data analysis, video development and assessment.

Relevance to patient community:

This project will provide much needed educational resource to help patients from marginalized population to participate in the decision-making process to accept or decline a less than ideal kidney.

Conclusion:

In conclusion, this important project will provide educational tool adapted on the needs of patients from marginalized populations. This new educational tool based on marginalized population patients’ needs will allow them to participate in the decision making process of accepting or not a deceased donor kidney offer and could potentially decrease the numbers of organs wasted and increase the access to kidney transplantation for patients from marginalized groups.

Eligibility

We are looking to recruit transplant candidates, kidney transplant recipients and caregivers from the Indigenous, Asian and Afro-Caribean communities in order to better understand their educational needs in order to help in the decision making process when a less then ideal kidney is offered. The interview will last between 40 and 60 minutes.

We are also looking for an Indigenous patient partner who will help us in the design of the interview guide, the recruitment and the data analysis. Our Indigenous patient partner who was involved in this project passed away this Spring. The patient partner will participate to our monthly research meeting and will need to work on the project 1-2h/month.

Participant eligibility:

  1. Aged 18 and older
  2. Speak French or English
  3. A kidney transplant candidate or kidney transplant recipient or a caregiver from the Indigenous, Asian or Afro-Carribean communities.

To be a patient partner:

  1. Aged 18 and older
  2. Speak French or English
  3. Have experiential knowledge of kidney transplantation
  4. From an Indigenous community

Type of Participation

Interview, Patient Partnership

Treatment

Transplantation

Location

All provinces and territories

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