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Operationalizing the Reciprocal Engagement Model of Genetic Counseling Practice: a Framework for the Scalable Delivery of Genomic Counseling and Testing.

ABSTRACT: With the advent of widespread genomic testing for diagnostic indications and disease risk assessment, there is increased need to optimize genetic counseling services to support the scalable delivery of precision medicine. Here, we describe how we operationalized the reciprocal engagement model of genetic counseling practice to develop a framework of counseling components and strategies for the delivery of genomic results. This framework was constructed based upon qualitative research with patients receiving genomic counseling following online receipt of potentially actionable complex disease and pharmacogenomics reports. Consultation with a transdisciplinary group of investigators, including practicing genetic counselors, was sought to ensure broad scope and applicability of these strategies for use with any large-scale genomic testing effort. We preserve the provision of pre-test education and informed consent as established in Mendelian/single-gene disease genetic counseling practice. Following receipt of genomic results, patients are afforded the opportunity to tailor the counseling agenda by selecting the specific test results they wish to discuss, specifying questions for discussion, and indicating their preference for counseling modality. The genetic counselor uses these patient preferences to set the genomic counseling session and to personalize result communication and risk reduction recommendations. Tailored visual aids and result summary reports divide areas of risk (genetic variant, family history, lifestyle) for each disease to facilitate discussion of multiple disease risks. Post-counseling, session summary reports are actively routed to both the patient and their physician team to encourage review and follow-up. Given the breadth of genomic information potentially resulting from genomic testing, this framework is put forth as a starting point to meet the need for scalable genetic counseling services in the delivery of precision medicine.

SUBMITTER: Schmidlen T

PROVIDER: S-EPMC6098987 | biostudies-literature | 2018 Sep

REPOSITORIES: biostudies-literature

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Operationalizing the Reciprocal Engagement Model of Genetic Counseling Practice: a Framework for the Scalable Delivery of Genomic Counseling and Testing.

Schmidlen Tara T Sturm Amy C AC Hovick Shelly S Scheinfeldt Laura L Scott Roberts J J Morr Lindsey L McElroy Joseph J Toland Amanda E AE Christman Michael M O'Daniel Julianne M JM Gordon Erynn S ES Bernhardt Barbara A BA Ormond Kelly E KE Sweet Kevin K

Journal of genetic counseling 20180219 5

With the advent of widespread genomic testing for diagnostic indications and disease risk assessment, there is increased need to optimize genetic counseling services to support the scalable delivery of precision medicine. Here, we describe how we operationalized the reciprocal engagement model of genetic counseling practice to develop a framework of counseling components and strategies for the delivery of genomic results. This framework was constructed based upon qualitative research with patien ...[more]

PMID: 29460110

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Project description:ObjectivesCurrently, HIV testing and counseling (HTC) services in Vietnam are primarily funded by international sources. However, international funders are now planning to withdraw their support and the Government of Vietnam (GVN) is seeking to identify domestic funding and generate client fees to continue services. A clear understanding of the cost to sustain current HTC services is becoming increasingly important to facilitate planning that can lead to making HTC and other HIV services more affordable and sustainable in Vietnam. The objectives of this analysis were to provide a snapshot of current program costs to achieve key program outcomes including 1) testing and identifying PLHIV unaware of their HIV status and 2) successfully enrolling HIV (+) clients in care.MethodsWe reviewed expenditure data reported by 34 HTC sites in nine Vietnamese provinces over a one-year period from October 2012 to September 2013. Data on program outcomes were extracted from the HTC database of 42,390 client records. Analysis was carried out from the service providers' perspective.ResultsThe mean expenditure for a single client provided HTC services (testing, receiving results and referral for care/treatment) was US $7.6. The unit expenditure per PLHIV identified through these services varied widely from US $22.8 to $741.5 (median: $131.8). Excluding repeat tests, the range for expenditure to newly diagnose a PLHIV was even wider (from US $30.8 to $1483.0). The mean expenditure for one successfully referred HIV client to care services was US $466.6. Personnel costs contributed most to the total cost.ConclusionsOur analysis found a wide range of expenditures by site for achieving the same outcomes. Re-designing systems to provide services at the lowest feasible cost is essential to making HIV services more affordable and treatment for prevention programs feasible in Vietnam. The analysis also found that understanding the determinants and reasons for variance in service costs by site is an important enhancement to the cascade of HIV services framework now adapted for and extensively used in Vietnam for planning and evaluation.

Project description:Background: Providers of sexual health services play an important role in counseling persons at risk of acquiring HIV. The aim of the present study was to investigate the knowledge of and attitudes toward HIV pre-exposure prophylaxis (PrEP) among counselors in non-governmental counseling centers ("NG counseling centers") and in counseling centers of the local health authorities ("local health offices") in Germany and to determine the extent to which PrEP plays a role in their current counseling practice. Methods: An anonymous cross-sectional study using an online questionnaire was conducted among counselors from sexual health centers across Germany. All NG counseling centers in Germany offering HIV testing were asked to participate. For each NG counseling center, a local health office in the same city was also invited. A "knowledge score" and an "attitudes score" were calculated from single items on various relevant aspects. The association of these scores with the proportion of PrEP advice provided proactively in sessions with men who have sex with men (MSM) and trans persons who met the German and Austrian guideline criteria for being offered PrEP ('at-risk clients') was quantified. Results: From Oct. to Dec. 2018, 145 counselors completed the survey. Both self-assessed knowledge of PrEP and attitudes toward PrEP were greater or more positive among counselors from NG counseling centers compared with counselors from local health offices [Median knowledge score (range 0-20): 18.0 (IQR = 5.0) vs. 14.0 (IQR = 4.0), p < 0.001; median attitudes score (range 0-20): 18.0 (IQR = 4.0) vs. 14.0 (IQR = 6.8), p < 0.001]. The proportion of PrEP advice provided proactively in sessions with at-risk clients was larger in counseling centers than in local health offices [50.0% (IQR = 60.0) vs. 30.0% (IQR = 70.0); p = 0.003]. The results of the multiple linear regression model indicate that knowledge and attitudes of the individual counselors, but not the type of center in which they worked, were independent predictors of the proportion of proactive advice on PrEP. Conclusions: There is room for improvement in the current PrEP counseling practice of sexual health services in Germany. The findings of the present study suggest opportunities to improve the implementation of PrEP as part of a comprehensive HIV prevention strategy.

Dataset Information

Operationalizing the Reciprocal Engagement Model of Genetic Counseling Practice: a Framework for the Scalable Delivery of Genomic Counseling and Testing.

Publications

Operationalizing the Reciprocal Engagement Model of Genetic Counseling Practice: a Framework for the Scalable Delivery of Genomic Counseling and Testing.

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