The impact of genetic counselors’ use of facilitative strategies on cognitive and emotional processing of genetic risk disclosure for Alzheimer’s disease
Introduction
Alzheimer’s disease (AD) is a prevalent, severe and currently incurable neurological condition characterized by progressive decline in cognitive and physical functioning leading to disability and death [1]. There is growing consensus that interventions to prevent AD are more efficacious the sooner they are implemented [2], [3]. As a result, the demand for genetic and other forms of predictive testing to identify at risk individuals is increasing. While several studies suggest that people seeking risk information for AD through genetic counseling generally find it useful and do not experience adverse effects [4], [5], [6], no studies have explored how individuals with mild cognitive impairment (MCI) process this information.
Individuals process threatening health information at both an emotional and cognitive level [7], [8]. The complex nature of genetic risk information for AD can be cognitively and emotionally overwhelming, and patients with MCI are likely to struggle more than others given cognitive deficits in memory and other domains [9], [10]. The social cognitive processing model (SCPM), proposed by Lepore and colleagues, suggests that talking with supportive others about stress and its associated consequences validates concerns, helps correct faulty assumptions, promotes accurate understanding and assists individuals in drawing meaning from an event [11]. Individuals who disclose thoughts and feelings to others are less likely to use avoidant coping strategies [12], [13] and more likely to make sense of their situation, experience less distress, take informed actions, and even improve physically [14], [15], [16], [17].
Despite the growing evidence linking supportive social interactions to cognitive processing and emotional adjustment, we know little about the specific communication strategies that support cognitive and emotional processing within healthcare contexts. A pioneering study in this area by Ellington and colleagues explored the application of SCPM principles to simulated prenatal and cancer pretest genetic counseling sessions [18]. In the study, counselors’ contributions to the session dialogue were coded with the Roter Interaction Analysis System (RIAS) to identify facilitative communication strategies and simulated clients’ responses during the session were coded using the Linguistic Inquiry Word Count (LIWC) to capture indicators of cognitive and emotional processing[18]. Greater counselor use of facilitative communication (especially asking psychosocial and lifestyle questions, asking for client opinion, probing understanding and use of paraphrase) was associated with higher word use indicative of cognitive and emotional processing during the encounter. Since the study was done in a simulated setting in the context of pretest counseling, it is not clear how the findings might differ from actual sessions in which risk information is disclosed.
A series of subsequent studies that used LIWC to examine pre and post-test genetic counseling for BRCA1/2 testing explored the relationship between client knowledge, screening behaviors and cognitive and affective word use by both counselors and clients [19], [20]. The authors concluded that the some LIWC patterns, particularly by the counselor, are associated with screening behaviors but not an increase in knowledge.
The current study was designed to extend the earlier work of Ellington and colleagues, by applying both the RIAS and LIWC to actual genetic counseling sessions in which AD risk information was conveyed to patients with MCI and a visit companion. In this study AD risk information was conveyed to patients with a clinician-determined diagnosis of MCI and a visit companion. The study makes an original contribution to the genetic counseling field and provides insight into communication dynamics of counseling sessions in which clients with mild cognitive deficits and family members process complex risk information-emotionally and cognitively. Moreover, the study bridges two quite distinct approaches to assessment of medical dialogue, the RIAS and LIWC, suggesting novel intersections that suggest new approaches to the examination of important communication processes.
Consistent with tenets of the SCPM, we hypothesized that greater use of facilitative strategies by genetic counselors would be positively associated with patient and companion word usage indicating emotional and cognitive processing.
Section snippets
Study design and data collection
Analyses were based on audio recordings and transcripts of AD risk disclosure sessions collected as part of the fourth REVEAL Study, a multisite randomized clinical trial designed to compare the impact of AD risk communication, conveyed with and without genotype results, to patients with MCI diagnoses and their visit companions. Patients were eligible for recruitment if they had clinical diagnosis of amnestic-MCI, defined as (1) a memory complaint, corroborated by an informant; (2) abnormal
Sample characteristics
Three genetic counselors participated in this study, one from each of three study sites (Boston, Philadelphia, and Ann Arbor). The counselors were female Caucasians aged 26 through 48 and they conducted between 4 and 40 disclosure sessions.
As displayed in Table 2, the 79 patients comprising our study sample averaged 76 years of age with the majority being male (56%) and Caucasian (96%). The mean level of education among patients was 16 years. More than half of the patients (N = 49, 62%) had at
Discussion
This study provides an exploratory analysis of how patients with a diagnosis of mild cognitive impairment and their visit companions process cognitive and emotional information conveyed during AD risk disclosure sessions. As hypothesized, genetic counselors’ use of facilitative communication strategies was positively associated with linguistic indicators of affective and cognitive processing during the disclosure sessions by patients and companions.
Consistent with the tenets of the SCPM, and
Conflicts of interest
Debra Roter is the author of the Roter Interaction Analysis System (RIAS) and holds the copyright for the system. Johns Hopkins University also has rights to some enhancements of the system. Neither Debra Roter nor Johns Hopkins collects royalties for use of the system in research as is the case for the current study. Debra Roter is an owner of RIASWorks LLC, a company that provides RIAS coding services for non-university projects and it is possible that RIASWorks would benefit indirectly from
Acknowledgements:
This work was supported by NIH grants HG002213, HG006500, HD077671, AG013846, RR000533, RR010284, TR001102, AG053760, and HG009173. Additional members of the REVEAL Study Group are Deborah Blacker, Massachusetts General Hospital/Harvard Medical School and Harvard School of Public Health, Boston, Massachusetts; Melissa Butson, Case Western Reserve University, Cleveland, Ohio; Clara Chen, Boston University School of Public Health, Boston, Massachusetts; Robert Cook-Deegan, Sanford School of
References (32)
- et al.
The diagnosis of mild cognitive impairment due to Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease
Alzheimer’s Dement.
(2011) - et al.
Comparing test-specific distress of susceptibility versus deterministic genetic testing for Alzheimer’s disease
Alzheimer’s Dement.
(2008) - et al.
A systematic review of perceived risks, psychological and behavioral impacts of genetic testing
Genet. Med.
(2008) - et al.
The Roter interaction analysis system (RIAS): utility and flexibility for analysis of medical interactions
Patient Educ. Couns.
(2002) Putting stress into words: health, linguistic, and therapeutic implications
Behav. Res. Ther.
(1993)Diagnosis and Management of Alzheimer's Disease and Other Dementias
(2005)- et al.
Testing the right target and right drug at the right stage
Sci. Transl. Med.
(2011) - et al.
Emotional responses to APO E genotype disclosure for Alzheimer disease
J. Genet. Couns.
(2005) - et al.
Disclosure of APOE genotype for risk of Alzheimer's disease
N. Engl. J. Med.
(2009) - et al.
Illness representations: theoretical foundations
Percept. Health Illn.
(1997)