DISCLOSING ALZHEIMER’S GENOMIC RISK TO FAMILY ACCOMPANIED COGNITIVELY IMPAIRED PATIENTS
MetadataShow full item record
Background More than five million Americans are currently affected by Alzheimer’s disease (AD), and that number is expected to triple by 2050. These staggering figures evoke dread; people fear developing the disease as well as the prospect of assuming the physical and emotional burden of caregiving for an affected family member. Current initiatives in AD research are increasingly targeting populations early in disease progression, including individuals who are experiencing mild cognitive impairment (MCI). Increasing reliance on biomarkers and more frequent use of susceptibility genetic testing, however, raises concerns regarding how patients, and particularly those with MCI, will make sense of the abstract and complex nature of the risk information that will be conveyed to them within the context of direct care, as well as research studies. Moreover, the active involvement of family members who often accompany patients with MCI raises questions regarding their role in these visits. Methods This study addresses these questions by providing an in-depth analysis of AD risk communication and its immediate consequences for 79 family-accompanied patients with MCI. This was done by analyzing audio recordings of AD risk disclosure and survey data collected as part of a randomized clinical trial, the Risk Evaluation and Education for Alzheimer’s Disease (REVEAL IV) (2009-2012), in which genotype results are/are not included in the AD risk discussion. A variety of coding schemas were applied to the study audio recordings. The Roter Interaction Analysis System (RIAS) was used to quantitatively describing the triadic interaction in AD risk disclosure sessions. Linguistic Inquiry Word Count (LIWC) was used to identify linguistic indicators of cognitive and emotional processing by patients and family companions. Patient and family companion satisfaction with the AD risk disclosure session was measured by a 10-item satisfaction survey. Multilevel mixed-effect linear regression models were used to identify differences in communication dynamics across the three study groups (genotype nondisclosure group, APOE ε4-negative group and APOE ε4-positive group), as well as to determine the association between genetic counselors’ facilitative communication strategies and linguistic indicators of cognitive and emotional processing of patients and companions. Multivariate logistic regression models were generated to examine communication elements of the AD risk disclosure encounter that predict patient and companion satisfaction with the disclosure session. Results This dissertation demonstrates that genotype disclosure discussions, regardless of patient genotype status, were less patient-centered than non-genotype AD risk discussions. A family companion was more verbally active in the communication processes of patients who receive ε4 positive than ε4 negative genetic test results; they disclosed more medical information, made more positive and orientation statements, and were rated as more nonverbally positive. Genetic counselors’ use of facilitative strategies were positively associated with patient and companion word use indicative of cognitive and emotional processing of the AD risk information. Furthermore, patient-centered and psychosocially focused communication pattern was associated with greater patient and family member satisfaction with AD risk disclosure sessions. Companion communication also appeared to play a significant role in enhancing patient satisfaction. Conclusions This dissertation furthers our understanding of how cognitively impaired patients and family companions communicate in AD risk delivery processes. Consistent with the Social Cognitive Processing Model, the results identified specific counselor’s communication strategies that facilitate cognitive and emotional processing of patients and companions in a way that may be linked to therapeutic benefit. The positive satisfaction outcomes associated with patient-centered communication also contribute to the growing literature on patient-centered care. The dissertation results highlight opportunities for healthcare providers, patients and family companions to increase effective interactions in AD risk disclosure settings.