Disclosing the Disclosure - Factors Associated with Communicating the Results of Genetic Susceptibility Testing for Alzheimer’s Disease (Tables)

Table 1. Items used to evaluate perceived benefits and drawbacks of undergoing genetic testing for AD Benefits of genetic testing for AD To prepare my family for my possible illness To arrange my personal affairs To start doing things sooner than I had planned to To know more about my risk in case better treatments become available To make arrangements for my long-term care To give information about my children’s possible risk of AD To put my mind at ease if I found out I was not at risk for AD To confirm the feeling that I might already be developing AD To seek information on preventive measures (lifestyle changes) Drawbacks of genetic testing It would be too upsetting to find out I’m at risk for AD Test does not give definite answer about whether I might get AD Test procedure would be too burdensome It could make me worry about my children’s risk of getting AD The test results might upset my loved ones The results could change how people look or act towards me The results could affect my employment There is no way to cure or prevent AD My family does not think it is a good idea for me Note: Three benefit items and one drawback item from the original scales were excluded because the results of factor analysis indicated that they had factor loadings that were lower than a predetermined level (0.40). Table 2. Demographic characteristics of the sample (N = 271) Yes Age 60 years and older 41.7% Education: 16 years or more 68.6% Male 29.5% White 81.5% Married 60.9% Carrier of ε4 allele 41.0% Extended disclosure protocol 32.8% Table 3. Frequencies of communication of APOE genetic test results (N = 271) Yes Have you told anyone the results of your APOE genetic test? 81.5% Who did you tell about the results of your APOE genetic test: family member? 63.8% Who did you tell about the results of your APOE genetic test: spouse or significant other? 50.9% Who did you tell about the results of your APOE genetic test: friends? 34.7% Who did you tell about the results of your APOE genetic test: health professional? 12.2% Table 4. Perceptions and beliefs about AD at baseline Mean (SD) Benefits of genetic testing for AD 3.51 (0.80) Drawbacks of genetic testing for AD 1.78 (0.64) Causal attribution of AD: genetics/heredity 4.08 (0.85) Causal attribution of AD: lifestyle 3.50 (1.11) AD optimism 3.66 (0.74) AD concern 3.41 (0.69) Perceived risk of developing AD (%) 51.35 (22.41) Table 5. Final models: Odds ratios and 95% confidence intervals when significant at p = 0.05 (N = 271) Spouse/ significant other 1.42 Family 1.76* (1.01, 3.08) Education: 16 years and up 1.68 2.01* (1.14, 3.55) 1.70 2.04* (1.10, 3.78) 1.01 Female 1.39 2.03* (1.12, 3.69) 1.87 1.84 2.25 White 1.51 1.06 1.89 2.67* (1.21, 5.92) 1.18 Married 1.17 1.31 11.90*** (6.21, 22.81) 0.52* (0.29, 0.92) 0.68 Carrier of ε4 allele 0.76 0.80 0.98 0.78 1.23 Condensed disclosure 1.23 1.37 0.89 1.44 5.19** (1.50, 17.89) Drawbacks of genetic testing NS NS NS 0.65* (0.42, 1.00) NS AD optimism NS 1.43* (1.00, 2.03) 1.62* (1.09, 2.41) 1.81** (1.22, 2.69) 2.20** (1.20, 4.04) Perceived risk 0.98* (0.97, 0.99) NS NS NS NS NS NS NS NS Age: 60 and older Causal 1.93** attribution to (1.26, 2.95) genetics *p < .05, **p < .01, ***p < .001 Friend 0.73 Health professional 1.36 Anyone 1.41 1. Each column represents an individual model for each outcome; 2. A horizontal line below ‘Condensed disclosure’ indicates the distinction between covariates (above the line) and ADbelief variables (below the line); 3. AD-belief variable that were not significant in any of the models are not presented in this table; 4. NS indicates that indicated AD-belief variable was not significant in the relevant model, thus not included in the final model.