Patients’ perceptions of the value of genetic testing and counseling in the Veterans Health Administration

Lerner BN, McIntosh NM, Clark JA, Frank NY, Meterko MM. Patients’ perceptions of the value of genetic testing and counseling in the Veterans Health Administration. Poster session presented at: AcademyHealth Annual Research Meeting; 2012 Jun 24; Orlando, FL.

Related HSR&D Project(s)

• PPO 10-114 – Measuring the quality of genomic health services in the VA: A pilot

Research Objective: The increasing clinical utility of genetic testing for adult-onset diseases has fostered the development of genetic services geared towards adults. These services are being adopted across the Veterans Health Administration (VHA), the largest integrated healthcare system in the United States. Measuring the quality of genetic services is an essential step to ensuring the best outcomes for patients, but tools for this purpose are limited. Consistent with the VHA's overall emphasis of patient-centered care, research on assessing the quality of genetic services in the VHA begins with patients' perceptions. Our objective was to describe patient experiences with the genetic services they received in the VHA, with a special emphasis on patient perceptions of the quality of services received and aspects of care that they particularly valued. Study Design: Semi-structured focus-groups and telephone interviews with patients who received genetic services were conducted, transcribed and analyzed by two health services investigators with training in genetic counseling. Analytic induction methodology was used to identify major themes, particularly those related to whether, and in what ways, genetic testing and counseling added value to the care patients received from the VHA. Population Studied: A total of 19 patients (12 women) participated. Seven were clinically symptomatic; 10 were referred for predictive testing and two for carrier testing. Reasons for referral included personal and/or family histories of cancer and hematological syndromes, ataxia, or chromosomal rearrangements. Participants were evenly split between patients who had requested the genetic services referral and those referred by a non-genetics provider. Principal Findings: The principal reasons for pursuing genetic testing were to diagnose current illness, anxiety about the risk of developing disease, and concern for the future health of children. 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, which tended to be much longer than their regular medical appointments. They were also pleasantly surprised by the ease of the genetic referral and testing process. For example, they appreciated the option of receiving test results by telephone to avoid a lengthy trip to the hospital for a disclosure session. They urged that availability of genetic services be better promoted, particularly in women's health clinics. 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 children. The latter was especially salient among asymptomatic individuals receiving cancer genetic testing services. Implications for Policy, Delivery or Practice: The option to pursue genetic testing and counseling, when medically indicated, appears to contribute 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 genetic testing process, with the support provided to non-veteran family members, and with outcomes such as patient empowerment should be considered when assessing the patient's perceived value of and the quality of genomics services.