Development and Evaluation of a Culturally Targeted Apolipoprotein L1 Counseling Training Program for Transplant Clinicians: A Pilot Study

Abstract

Rationale & Objective

Apolipoprotein L1 (APOL1) genetic testing is increasingly used to evaluate potential living kidney donors (pLDs) of African ancestry. Transplant clinicians may benefit from improving knowledge and skills in delivering APOL1 counseling. This multisite study developed and evaluated the effectiveness of a culturally targeted Counseling Training Program on APOL1 and Living Donation (“Training Program”) to train transplant clinicians on APOL1 biology, genetics, and genetic counseling.

Study Design

A prospective, nonrandomized pretest/posttest clinical trial.

Setting & Participants

Transplant nephrologists, surgeons, nurses, advanced practice providers, and general nephrologists at 6 kidney transplant centers.

Intervention

The training program included 8 prerecorded videos about APOL1 and living kidney donation, counseling skills, cultural sensitivity, and shared decision making.

Outcomes

Knowledge and self-efficacy in genetic counseling, knowledge of genetic variation, use of race in clinical decision making, and beliefs about the relationship between genetics and race, as assessed via validated surveys.

Analytic Approach

Paired tests of pre–post scores from validated surveys.

Results

In total, 35 clinicians participated; 21 were female, and 34 had no formal genetics training. Training program exposure was significantly associated with an increase in knowledge of genetic variation: pre, 3.31 (1.41); post, 3.91 (1.27), P = 0.04. Participants reported increased confidence post-training in their ability to know when the APOL1 genetic test is indicated (P = 0.001), interpret APOL1 test results (P < 0.001), and communicate about APOL1 in a culturally sensitive manner (P < 0.001). There was a nonsignificant decrease in beliefs about relationships between genetics and race from pretest to posttest (biologic domain: pre, 9.63 (3.06); post, 9.06 (2.76), P = 0.32; clinical domain, pre, 11.03 (2.22); post, 10.57 (2.63), P = 0.36).

Limitations

Small sample size and nonrandomized design.

Conclusions

Our findings suggest the training program can increase transplant clinicians’ competence in counseling pLDs about APOL1 genetic testing. Training program dissemination may facilitate integration of APOL1 testing and counseling into pLD evaluation nationally.

Plain Language Summary

Although genetic testing is increasingly used to evaluate potential living kidney donors (pLDs), transplant clinicians may benefit from improving their delivery of Apolipoprotein L1 (APOL1) counseling. We developed and evaluated a culturally targeted Counseling Training Program on APOL1 and Living Donation (“training program”) to train transplant clinicians on APOL1 biology, genetics, and genetic counseling. We conducted a prospective, nonrandomized pretest/posttest clinical trial. The training program exposure was significantly associated with an increase in knowledge of genetic variation. Participants reported increased confidence post-training in knowing when the APOL1 genetic test is indicated, interpreting APOL1 test results, and communicating about APOL1 in a culturally sensitive manner. Findings suggest the training program can increase transplant clinicians’ competence in counseling pLDs about APOL1 genetic testing.