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Genetic Testing (APOL1) Decisional Support for Potential Living Kidney Donors

为潜在活体肾脏捐赠者提供基因检测 (APOL1) 决策支持

基本信息

批准号：
10494134
负责人：
Heather Marie Gardiner
金额：
$ 55.53万
依托单位：
TEMPLE UNIV OF THE COMMONWEALTH
依托单位国家：
美国
项目类别：
财政年份：
2021
资助国家：
美国
起止时间：
2021-09-30 至 2025-04-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10494134
关键词：
Advocate Affect African African American African American population African Trypanosomiasis African ancestry Alleles Apolipoproteins Attitude Award Belief Benefits and Risks Cancer Model Caring Chronic Kidney Failure Clinical Communication Consultations Decision Making Development End stage renal failure Ensure Evaluation Face Family Family member Feedback Financial Hardship Focal Segmental Glomerulosclerosis Focus Groups Genes Gold Graft Rejection Group Interviews HIV Health Hypertension Individual Intervention Kidney Kidney Diseases Kidney Transplantation Knowledge Latinx Living Donors Medical Methodology Methods Modification Outcome Parasitic infection Patient Care Patients Persons Phase Process Provider Quality of life Randomized Controlled Clinical Trials Recommendation Research Risk Safety Series Social Workers Societies Speed Standardization Surveys Testing Transplant Recipients Transplantation United States Variant Work base clinical decision-making clinical practice cost cultural values design ethnic minority ethnic minority population genetic testing genetic variant improved living kidney donor minority patient nephrogenesis non-diabetic novel point of care preference programs randomized controlled design response shared decision making support tools tool willingness

项目摘要

PROJECT SUMMARY The identification of the Apolipoprotein L-1 or APOL1 gene as an indicator of increased likelihood of developing chronic kidney disease has sparked a debate about point-of-care genetic testing for potential living kidney donors. While integrating genetic testing into the medical evaluation of potential living donors benefits patients, ensuring an informed, deliberative decision making process is paramount. The proposed study is premised on a large body of research demonstrating that traditional SDM processes and interventions fail to meet the needs of ethnic minority populations. Because SDM requires an informed patient to engage in the decision making process, novel methods are needed to assure a full, accurate understanding of risks, benefits, implications and alternate options. We propose a participatory approach to developing a decisional support tool for African American potential donors as they consider genetic testing as part of their medical evaluation. Specifically, this mixed-method study will conduct the formative research needed to develop and refine the tool. Up to 6 focus group interviews will explore potential donors' preferences for shared decision making and understanding of the risks, benefits and implications of genetic testing in the context of live kidney donation (Aim 1). The findings will inform the design of a brief quantitative survey assessing potential donors' decision-making preferences, communication style, and knowledge of and attitudes toward genetic testing, kidney transplantation and living donation. The survey (N=500) will be the first to include the Best-Worst Scaling methodology to assess the level of importance potential donors place on the risks and benefits of genetic testing as well as trade offs between risks and benefits donors are willing to make (Aim 2). A draft of the tool will be created, using the Ottowa Framwork as guide, to support African American patients and their families making decisions about both living donor kidney transplants and genetic testing in this context. Additional modifications will be made based on the findings of the focus group interviews and completed surveys. The tool will then be refined iteratively over four rounds of testing in simulated consultations with standardized providers and four rounds with a Delphi panel of transplant professionals (Aim 3). A Stakeholder Committee, comprised of transplant professionals and previous and potential living donors, will provide ongoing feedback and guidance across all study phases. In a subsequent R01, the fully-vetted, newly developed tool will be implemented and tested in clinical settings using a randomized controlled design. If successful, the tool will optimize care for the thousands of African American potential living kidney donors evaluated in the United States annually.

项目总结