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NDSC RESEARCH NEWS

TO: NDSC Members and Affiliated Parent Groups

FROM: Sue Joe

Resource Specialist

DATE: March 1, 2005

Mothers Speak Again: Physicians Must Improve How They Deliver a Prenatal

Diagnosis of Down Syndrome

Specific Recommendations Offered

A study released today by the American Journal of Obstetrics and Gynecology, and

reprinted at the NDSC website (www.ndsccenter.org), found that, when delivering

a prenatal diagnosis of Down syndrome, obstetricians and genetic counselors

often fail to tell their patients about the positive potential of people with

Down syndrome, and also fail to provide up-to-date information or contact

information for parent support groups.

According to the study’s author, Skotko, “Doctors continue to find it very

challenging to deliver a diagnosis like Down syndrome to an otherwise happy

expectant mom.” However, Skotko notes, “the results of this study are

conclusive: Delivering a prenatal diagnosis of Down syndrome does not have to

be a gloomy affair. In fact, mothers in this study have now written the

prescription on how best to explain the diagnosis in a loving manner.”

Skotko, who is known to many as the leader of past NDSC Brother/Sister

Conferences, published a companion paper in the January issue of Pediatrics

summarizing responses from women who received the Down syndrome diagnosis

postnatally. He also has conducted the same pair of studies in Spain to get a

cross-cultural perspective. He is a joint-degree student at Harvard Medical

School and Harvard’s F. Kennedy School of Government. His faculty advisor,

Dr. Crocker, is a member of the NDSC’s Professional Advisory Council and

has served on the NDSC Board of Directors and the NDSC Foundation Board of

Trustees.

The majority of mothers sampled in the study said they felt anxious

and scared after receiving the results of their amniocentesis test. Through

their collective responses, mothers have now asked obstetricians and genetic

counselors to adopt seven recommendations when delivering a prenatal diagnosis

of Down syndrome:

(1) Results of the prenatal screening should be clearly explained as

a risk

assessment, not a “positive” or “negative” result. Many mothers understood the

triple or quadruple screen to be an all-or-nothing statistic. Physicians need

to explain,

in plain English, what the odds ratios mean so that mothers can make an informed

decision on if and how to proceed with more definitive testing.

(2) Results from the amniocentesis or CVS should, whenever possible, be

delivered

in person, with both parents present. Mothers who had to learn of the diagnosis

by

telephone reported intense resentment for their obstetricians and/or genetic

counselors.

Ideally, physicians should ask that all persons receiving prenatal testing

return, in

person, to hear the results.

(3) Sensitive language should be used when delivering a diagnosis of Down

syndrome. Mothers requested that physicians not begin by saying, “I’m sorry,”

or

“Unfortunately, I have some bad news to share.”

(4) If obstetricians rely on genetic counselors or other specialists to explain

Down

syndrome, sensitive, accurate, and consistent messages must be conveyed. One

mother wrote that her genetic counselor “showed a really pitiful video, first of

people

with Down syndrome who were very low tone and lethargic-looking, and then

proceeded

to tell us (in 1999) that our child would never be able to read, write, or count

change.”

(5) Physicians should discuss all reasons for prenatal diagnosis, including

reassurance, advance awareness before delivery of the diagnosis of Down

syndrome,

adoption, as well as pregnancy termination. Physicians must now realize that

many

mothers who opt for prenatal testing have no intention of terminating their

pregnancies

and are offended by their physicians’ assumptions that they would do so.

(6) Up-to-date information on Down syndrome should be available. Mothers have

requested two kinds of information: accurate clinical knowledge and “success

stories”

that demonstrate the potential and possibilities for children with Down

syndrome. The

Healthcare Guidelines for infants and toddlers with Down syndrome was cited for

the

clinical information, and books such as Common Threads: Celebrating Life with

Down

Syndrome (co-authored by Skotko and NDSC Board member Kidder), Babies

with Down Syndrome: A New Parent’s Guide, and Choosing Naia: A Family’s

Journey

(about NDSC Board member Greg Fairchild, and his wife) were all found to be

helpful as success stories.

(7) Contact with local Down syndrome support groups should be offered, if

desired.

Mothers consistently and overwhelmingly appreciated when their physicians

provided

contact information for local support groups. One mother reported that after

talking to

other parents, “I felt 100% better and positive about having my daughter.”

Interestingly, mothers who received prenatal diagnoses were generally happier

over the birth of their infants with Down syndrome than mothers who had received

the news postnatally. This difference might stem from the fact that mothers who

had prenatal testing tended to resolve any grief before the child was born.

“This study offers an excellent tool with which parents and parent groups may

educate their local obstetricians and genetic counselors,” according to National

Down Syndrome Congress President Judy Martz. She adds, “In addition to ’s

study, parents should also share the NDSC’s new “Down Syndrome” brochure with

the appropriate professionals in their area. It is a beautiful piece, which

shares accurate information in a positive light.”

The NDSC National Center provides free information and the resources of its

renowned Professional Advisory Committee through its toll-free hotline

(800/232-6372) or via e-mail at info@....

NDSC Executive Director Tolleson notes, “ Skotko continues to serve

those with Down syndrome and their families in wonderful and remarkable ways.

For a medical student to have two studies published in separate medical journals

within a span of two months is extraordinary. We are grateful for ’s

ongoing relationship with the NDSC and for his service to others.”

A summary of the Skotko report, as well as the full text, and a link to the

American Journal of Obstetrics and Gynecology, may be found at the NDSC website

at www.ndsccenter.org.

Financial support for this research was provided by the Tim White Fund from

Children’s Hospital Boston and a part-time research grant from Harvard Medical

School.

Some of the information for this release was provided by Skotko, who may

be contacted at _Skotko@.... Additional information

was provided by the Children’s Hospital of Boston (contact -Ellen Shay at

617/355-6420) and Harvard Medical School (contact Lacey at 617/432-0442).

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How to Join the NDSC

Founded in 1972, the NDSC is the oldest national organization for persons with

Down syndrome, their parents, siblings and the professionals who work with them.

The Congress is known for its advocacy, its encouragement of self-advocate

empowerment and leadership, as well as its many services, including Down

Syndrome News, the Governmental Affairs Newsline, Research News, hosting the

nation’s largest DS convention (scheduled for July 29-31, 2005 in Anaheim, CA)

and its toll-free information and resource hotline.

Annual dues are just $25, and may be paid online at www.ndsccenter.org; over the

phone at 800/232-6372; or by mail at 1370 Center Drive, Suite 102; Atlanta, GA

30338.

Please join us as we continue “Making a difference, one family at a time”!

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If you have questions or comments, please e-mail sue@.... We are

always glad to receive comments and answer questions.