TABLE 4.
Specific considerations influencing views toward APOL1 testing
| Final response-would want genetic testing for APOL1 before kidney donation |
Changed response from beginning to end |
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|---|---|---|---|---|---|---|---|
| Level of influence of each presented benefit/drawback | All Participants | Yes | No | P-value, test statistic | Yes | No | P-value, test statistic |
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| mean (± SD) on a scale of 1-5 (none to extremely) | |||||||
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| No. of participants | 102 | 53 | 49 | – | 28 | 74 | – |
| Benefits | |||||||
| Becoming aware of your risk for kidney disease related to APOL1 | 2.88 (± 1.42) | 3.47 (± 1.24) | 2.27 (± 1.35) | P < .001, z = −4.27 | 2.75 (± 1.40) | 2.93 (± 1.44) | P = .575, z = .56 |
| Becoming more educated about potential kidney disease related to APOL1 | 3.16 (± 1.38) | 3.72 (± 1.17) | 2.55 (± 1.34) | P < .001, z = −4.20 | 3.07 (± 1.30) | 3.19 (± 1.41) | P = .662, z = .44 |
| Becoming aware of the potential risk of kidney disease among your immediate family | 3.29 (± 1.44) | 3.96 (± 1.11) | 2.57 (± 1.41) | P < .001, z = −4.82 | 3.29 (± 1.33) | 3.30 (± 1.49) | P = .847, z = .19 |
| Contributing to your current knowledge of APOL1 | (3.05 ± 1.41) | 3.72 (± 1.10) | 2.33 (± 1.36) | P < .001, z = −4.90 | 3.04 (± 1.32) | 3.05 (± 1.45) | P = .924, z = .10 |
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| Drawbacks | |||||||
| You and your family members’ perception of the level of risk for kidney disease may change | 2.51 (± 1.37) | 2.74 (± 1.31) | 2.27 (± 1.41) | P = .064, z = −1.86 | 2.68 (± 1.33) | 2.44 (± 1.39) | P = .375, z = −.89 |
| You may need to share this information with the recipient who may no longer want your kidney | 2.65 (± 1.40) | 3.04 (± 1.37) | 2.22 (± 1.31) | P = .003, z = −2.96 | 2.50 (± 1.20) | 2.70 (± 1.47) | P = .577, z = .56 |
| You may have long-term financial risk with respect to your health and life insurance | 2.77 (± 1.55) | 3.02 (± 1.46) | 2.51 (1.62) | P = .071, z = −1.81 | 3.11 (± 1.50) | 2.65 (± 1.57) | P = .196, z = −1.29 |
| Some transplant centers may not allowyou to donate if you have two copies of the higher-risk forms | 2.85 (± 1.47) | 3.15 (± 1.35) | 2.53 (± 1.54) | P = .028, z = −2.20 | 2.82 (± 1.36) | 2.86 (± 1.52) | P = .869, z = .17 |
| You may feel stressed and anxious if you learned you had two higher-risk forms of the gene | 2.74 (± 1.43) | 3.00 (± 1.30) | 2.45 (± 1.53) | P = .033, z = −2.13 | 2.79 (± 1.42) | 2.75 (± 1.45) | P = .809, z = −.24 |
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| Average individual level of response | |||||||
| Across all benefits | 3.10 (± 1.30) | 3.72 (± 1.27) | 2.43 (± 1.24) | P < .001, z = −5.02 | 3.04 (± 1.16) | 3.12 (± 1.36) | P = .635, z = .48 |
| Across all drawbacks | 2.71 (± 1.24) | 3.00 (± 1.08) | 2.40 (± 1.34) | P = .016, z = −2.41 | 2.78 (± 1.18) | 2.68 (± 1.27) | P = .619, z = −.50 |
*
Notes: “Final response” corresponds to participants response after presentation of both the benefits and drawbacks; Comparisons between participants who wanted testing or not, and participants who changed their initial responses or not, were made using the Wilcoxon rank-sum test.