Balancing prenatal information: medical outreach by local Down syndrome support organizations

DSI Medical Outreach

Members of Down Syndrome Indiana with your author receiving medical outreach training

Prenatal testing for Down syndrome is supposed to be about providing information to expectant mothers. But, most mothers are not receiving all the information. Some local support organizations are trying to bridge this information gap.

Since 2007, all expectant mothers are to be offered prenatal testing for Down syndrome (and other aneuploidies). In a survey of 500 ACOG fellows published in 2009, it reported that 99% were following the guidelines and offering some form of prenatal testing to all of their patients. A separate study published in 2013 reported that upwards of 70% of all expectant mothers accept some form of prenatal testing. But the same 2009 study found that only 29% of obstetricians said they provided educational materials to their patients.

Graphically, these numbers can be presented this way:

Info Gap

This gap between the number of women that accept prenatal testing and the far smaller number who receive educational materials is reflected in the comments shared on this blog from expectant mothers receiving nothing with their cell free DNA results.

This despite the same professional guidelines that recommend offering prenatal testing to expectant mothers also recommending that accompanying a prenatal test result:

  • “the patient shoudl receive detailed information, if known, about the natural history of individuals with the specific chromosomal finding. … Referral to parent support groups … may provide additional information and support.” (ACOG Practice Bulletin No. 88).
  • The National Society for Genetic Counselors guidelines on delivering a prenatal or postnatal Down syndrome diagnosis provides bullet points of balancing information to deliver with a test result, a list of approved resources, and recognize the value patients place on hearing of life stories of those living with Down syndrome.
  • And, the American College of Medical Genetics & Genomics distills it down (possibly to make it easier for practitioners) to recommending that patients receive written resources, and then identifies three resources to be provided with a cell free DNA screen result.

So, women are to be offered prenatal testing and they are to receive written information about Down syndrome, but too often, too many are only being given the prenatal test result.

What is to be done?

For some, it is passing laws mandating that healthcare providers abide by their professional guidelines. But, simple passage of laws is not enough, since implementation is inconsistent by the states with Down Syndrome Information Acts (for instance, Louisiana has done nothing despite having the law on the books for over a year and Pennsylvania’s “Chloe’s Law” produced information so bad about Down syndrome, patients are being told to ignore it).

Instead, some support organizations are recognizing that if they do not mobilize and engage purposefully in medical outreach, there is no one else who will ensure expectant women receive accurate, up-to-date information about what living a life with Down syndrome can be like.

In 2013, I trained members of the Down Syndrome Association of Central Ohio and the Upside of Down syndrome. Based in Columbus and Cleveland, respectively, these groups have invested in paid staff devoting time to medical outreach, with the Columbus organization becoming a model of medical outreach: developing a deep bench of volunteers who reach out to dozens of medical practices and hospitals in almost twenty counties delivering information that is now mandated to be provided under Ohio’s Down Syndrome Information Act.

In 2014, the Bloomington, Indiana based Down Syndrome Family Connection, invested a Saturday in having medical outreach training. I wrote about that training here and how it was a bit of cosmic justice for a past tragedy that happened in Bloomington to a newborn with Down syndrome.

This past Saturday, Down Syndrome Indiana, based in Indianapolis also devoted a Saturday to training volunteers in engaging in effective medical outreach. DSI’s executive director attended the 2014 training in Bloomington and returned to ask her board to invest in the day of training. And, DSI did so even though Indiana has joined the ranks of those organizations that have passed the Down Syndrome Information Act. Rather than believe the work was done and leave it to the state agency to implement the law, DSI invested in training to ensure practitioners and hospitals in their service area would receive the recommended information to be given expectant mothers receiving a prenatal test result and the information mothers need who find out at the birth of their child.

Guidelines have long called for expectant mothers to receive balanced, accurate information about Down syndrome with the delivery of a prenatal test result. Because practitioners are not administering prenatal testing in compliance with their professional guidelines, increasingly, states are passing laws to require compliance. But, Down syndrome support organizations know that is not enough. To ensure women finally receive all the information they are seeking when accepting prenatal testing, responsible organizations are investing in medical outreach training to mobilize staff and volunteers to develop a program of delivering recommended resources to practitioners in their area.

Since 2013, organizations in Ohio and Indiana have invested in training. Who will be next?

If interested in having medical outreach training for your organization, please send me an email at mleach@downsyndromeprenataltesting.com or message me on Facebook or Twitter. I hope to hear from you. 

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