Measuring quality and value in genetic counseling: The current landscape and future directions.

Genetic counselors strive to provide high-quality genetic services. To do so, it is essential to define quality in genetic counseling and identify opportunities for improvement. This Professional Issues article provides an overview of the evaluation of healthcare quality in genetic counseling. The National Society of Genetic Counselors' Research, Quality, and Outcomes Committee partnered with Discern Health, a value-based healthcare policy consulting firm, to develop a care continuum model of genetic counseling. Using the proposed model, currently available quality measures relevant to genetic counseling in the US healthcare system were assessed, allowing for the identification of gaps and priority areas for further development. A total of 560 quality measures were identified that can be applied to various aspects of the care continuum model across a range of clinical specialty areas in genetic counseling, although few measures were specific to genetic counseling or genetic conditions. Areas where quality measures were lacking included: attitudes toward genetic testing, family communication, stigma, and issues of justice, equity, diversity, and inclusion. We discuss these findings and other strategies for an evidence-based approach to quality in genetic counseling. Strategic directions for the genetic counseling profession should include a consolidated approach to research on quality and value of genetic counseling, development of quality metrics and patient-experience measures, and engagement with other improvement activities. These strategies will allow for benchmarking, performance improvement, and future implementation in accountability programs which will strengthen genetic counseling as a profession that provides evidence-based high-quality care to all patients.

Progress in Cancer Control in Maryland: 1985-2015.

PURPOSE: Maryland historically had a high cancer burden, which prompted the implementation of aggressive cancer control strategies. We examined the status of cancer in Maryland and work under the current and previous editions of the MD Comprehensive Cancer Control Plan. METHODS: We examined the prevalence of cancer mortality, cancer incidence, and cancer-related behaviors in Maryland and the United States from 1985 to 2015 using publicly available data in the US Cancer Control PLANET, CDC WONDER, and Behavioral Risk Factor Surveillance System portals. We estimated the average annual cancer deaths avoided by triangulation. RESULTS: In 1983-1987, Maryland had the highest age-adjusted cancer mortality rate of all 50 states, second only to Washington, District of Columbia. Today (2011-2015), Maryland's age-adjusted cancer mortality rate ranks 31st. Overall cancer mortality rates have declined 1.9% annually from 1990 to 2015, avoiding nearly 60 000 deaths over 3 decades. While the prevalence of healthy cancer-related behaviors in Maryland was qualitatively similar or higher than that of the United States in 2015, Maryland's 5-year (2011-2015) cancer incidence rate was significantly greater than that of the United States. CONCLUSIONS: Maryland's 30-year cancer mortality declines have outpaced other states. However, a reduction in mortality while incidence rates remain high indicates a need for enhanced focus on primary prevention.