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Frank NY, Lerner BN, McIntosh NM, Clark JA, Meterko MM. Assessing the Value of Appropriate Genetic Testing and Counseling in the VA. Poster session presented at: American College of Medical Genetics and Genomics Annual Clinical Genetics Meeting; 2012 Mar 31; Charlotte, NC.
Objectives: The increasingly recognized clinical utility of genetic testing for adult-onset diseases is prompting the need to assess the quality of genetic services provided in the VHA. As a precursor to this objective this qualitative study examined Veterans' perceptions regarding the value of genomic services. Methods: Based on the theory of Patient Empowerment in Clinical Genetics, three focus groups and four individual interviews with Veterans referred for genetic testing at one VA medical center were conducted and audio-recorded. Two research trained genetic counselors coded transcripts using analytic induction to identify major themes particularly related to whether genetic testing and counseling added value to the care they receive from the VA. Results A total of 16 patients (8 women) participated. Five were symptomatic; eight were referred for predictive testing and three for carrier testing. Reasons for referral included cancer and hematological syndromes, ataxia, and chromosomal rearrangements. Participants were evenly split between those who requested the referral and those whose non-genetic medical specialist recommended it. Concern for the future health of children was an important motivator for pursuing testing in addition to personal health and psychological concern. Genetic test results were described as extremely valuable, providing choices regarding medical management and lifestyle behaviors. Participants appreciated the time allocated for the counseling session and were pleasantly surprised by the ease of the genetic referral and testing process. They urged that its availability be better promoted, particularly in women's health clinics. As one patient said "Give a Vet the choice." Conclusions: Participants generally found genetic counseling to be informative and satisfying, and reported that having choices provided an important sense of control over the risk of developing disease for themselves and their offspring. The latter was especially salient among women getting cancer genetic testing. Impact Statements: The option to pursue genetic testing and counseling, when medically indicated, appears to contribute substantially to the patient's quality of life by providing a sense of greater empowerment and control over their health and lifestyle choices. Veteran satisfaction with the steps in the process, support with family interactions, and outcomes such as patient empowerment should be considered when assessing the quality of genomics services.
