Many pediatricians uncomfortable providing care to kids with genetic conditions

November 19, 2013

Ann Arbor, Mich. -- Many primary care pediatricians say they feel uncomfortable providing health care to patients with genetic disorders. Also, many do not consistently discuss all risks and benefits of genetic tests with patients, according to research published today in the American Journal of Medical Genetics.

Investigators from the University of Michigan's C.S. Mott Children's Hospital and The Children's Hospital at Montefiore (CHAM) conducted a national survey of 88 physicians who are part of the American Academy of Pediatrics Quality Improvement Innovation Networks, assessing their comfort level ordering genetic tests for their pediatric patients, their attitudes toward genetic medical care and their choices regarding taking family histories. The majority of those physicians reported ordering few genetic tests (three or less times) per year, excluding newborn screening which is federally mandated for all newborns; few (13 percent) strongly agreed that they discussed the potential risks, benefits, and limitations of genetic tests with all their patients and only half felt competent in providing healthcare to patients with genetic disorders.

"While genetics has historically been viewed as a discipline focused on rare conditions, recent genomic advances have highlighted that genetics has a role in common conditions encountered in primary care medicine," said Beth Tarini, M.D., M.S., F.A.A.P., senior author, assistant professor of pediatrics, Child Health Evaluation & Research (CHEAR) Unit, Division of General Pediatrics, University of Michigan and co-medical director of the Genetics in Primary Care Institute (GPCI), a project of the American Academy of Pediatrics. "Unfortunately, most PCPs have received insufficient education and training about genetics, which has left them uncertain about their role in providing genetics related care."

The study found that 100% of study participants stated that taking a family history is important, but less than one-third stated that they gather a minimum of a three-generation family history, a basic component of a genetic medical evaluation. Previous studies have shown that using family history and genetic information greatly improved outcomes for patients so researchers encourage patients to know their family history and share this with their providers in order to optimize their health care.

"PCPs play an integral role in caring for children with genetic conditions and it is vital that they feel comfortable identifying issues and providing comprehensive care to suit their patients' unique needs," said Michael L. Rinke, M.D., Ph.D., lead author and assistant medical director for quality, CHAM, and assistant professor of pediatrics at Albert Einstein College of Medicine of Yeshiva University. "Thousands of children in the U.S. are diagnosed with genetic disorders annually and in order to optimize outcomes for these patients' early identification and medical intervention is essential."

The researchers say that robust education, increased access to resources, improved electronic health records systems to document family histories and rigorous quality improvement efforts are key to enhancing integration of genetic medicine into routine primary preventative care.

Tarini says that the national Genetics in Primary Care Institute Quality Improvement Project hopes to identify effective strategies so that physicians who are at the forefront of diagnosing and managing patients with genetic disorders feel confident and competent in their abilities to provide care for these patients.
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This study is particularly timely as Thanksgiving approaches. In 2004, the Surgeon General declared Thanksgiving to be National Family History Day. All Americans are encouraged to talk about, and to write down, the health problems that seem to run in their family during this time of family togetherness. Knowing the family's health history may help ensure a longer, healthier future together. (http://www.hhs.gov/familyhistory/)

About the University of Michigan's C.S. Mott Children's Hospital: Since 1903, the University of Michigan has led the way in providing comprehensive, specialized health care for children. From leading-edge heart surgery that's performed in the womb to complete emergency care that's there when you need it, families from all over come to the U-M C.S. Mott Children's Hospital for our pediatric expertise.

For more information, go to
http://www.mottchildren.org

About Montefiore Medical Center

As the University Hospital for Albert Einstein College of Medicine, Montefiore is a premier academic medical center nationally renowned for its clinical excellence, scientific discovery and commitment to its community. Recognized among the top hospitals nationally and regionally by U.S. News & World Report, Montefiore provides compassionate, patient- and family-centered care and educates the healthcare professionals of tomorrow. For more information please visit http://www.montefiore.org and http://www.montekids.org.

University of Michigan Health System

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