Heidi Splete

Major Finding: Death or the need for a shunt was significantly less likely in the prenatal surgery group, compared with the postnatal surgery group (68% vs. 98%).

Data Source: In the Management of Myelomeningocele Study (MOMS), 183 volunteer women with singleton pregnancies were randomized to prenatal surgery before the 26th week of pregnancy or surgery for their infants after birth.

Disclosures: The study was sponsored by the National Institutes of Health.

Prenatal surgery to repair myelomeningoceles significantly reduced the need for shunts at 1 year of age and improved children's motor function at age 30 months, compared with children who had surgery after birth, based on data from a randomized trial of 183 pregnant women.

The results reflect data from 158 children who were evaluated at 12 months of age and 134 children evaluated at 30 months. Data collection is ongoing.

The surgery to repair the opening in the spine is usually performed after birth, but data from animal studies suggest that prenatal surgery could result in fewer complications, said Dr. N. Scott Adzick of the Children's Hospital of Philadelphia and his colleagues.

In the Management of Myelomeningocele Study (MOMS), 183 volunteer women with singleton pregnancies were randomized to prenatal surgery before the 26th week of pregnancy or surgery for their infants after birth (N. Engl. J. Med. 2011 [doi:10.1056/NEJMoa1014379]).

The children were examined for two primary outcomes. The first outcome, at age 12 months, was patient death or the need for a shunt. The second outcome, at age 30 months, was a composite score of motor function and brain development. The score was based on the Bayley Scales of Infant Development II (BSID-II) Mental Development Index and the difference between each child's actual ability and his or her expected motor function based on the severity of the spinal defects.

Death or the need for a shunt was significantly less likely in the prenatal surgery group, compared with the postnatal surgery group (68% vs. 98%). The rates of shunt placement were significantly lower in the prenatal surgery group, compared with the postnatal surgery group (40% vs. 82%).

All the fetuses in the study suffered from hindbrain herniation, in which the base of the brain is pulled into the spinal canal. But at 12 months, 36% of the children in the prenatal surgery group had no evidence of hindbrain herniation, compared with 4% in the postnatal surgery group. In addition, infants in the prenatal surgery group had lower rates of moderate or severe hindbrain herniation than did the postnatal surgery group (25% vs. 67%).

In addition, infants in the prenatal surgery group scored an average of 21% higher on measures of mental and motor function, compared with the postnatal surgery group, with primary outcome scores of 149 vs. 123, respectively.

Infants who underwent prenatal surgery were born at a mean 34.1 weeks of pregnancy, compared with a mean 37.3 weeks of pregnancy for the postnatal surgery group. Significantly more infants in the prenatal surgery group had respiratory distress syndrome, compared with the postnatal surgery group (21% vs. 6%).

In terms of secondary outcomes, children in the prenatal surgery group were more likely to be able to walk without crutches or other orthotic devices, compared with the postnatal surgery group (21% vs. 42%).

The mean age of the pregnant women was 29 years. Each fetus had a myelomeningocele located between the T1 and S1 vertebrae, evidence of hindbrain herniation, and a gestational age of 19.0-25.9 weeks. Exclusion criteria included body mass index of 35 kg/m

Approximately one-third of the women in the prenatal surgery group showed uterine thinning or an area of dehiscence at the time of delivery. Women undergoing prenatal surgery must understand that they will require a cesarean delivery for the current pregnancy and any future pregnancies, the researchers added.

Myelomeningocele, a severe form of spina bifida in which the backbone and spinal canal do not close completely before birth, occurs in approximately 4 of every 10,000 births in the United States, Dr. Diana L. Farmer, division chief of pediatric surgery at the University of California, San Francisco, said in a teleconference. Dr. Farmer was one of several researchers on the study who took part in a teleconference to present the study findings.

The study was not large enough to show an impact of gestational age on the results, but data collection is ongoing. “This is a priceless cohort of patients that we will follow for a longer period of time,” Dr. Farmer said. She noted that the National Institutes of Health has agreed to fund follow-up of the patients until age 6–9 years. Future studies will include whether the children in the prenatal surgery group remain free of shunts, maintain improved motor function, and require fewer procedures, compared with the postnatal group.

Although the surgery is highly specialized and more research is needed, the results suggest that ob.gyns. can recommend the procedure to appropriate patients at this time, Dr. Farmer said.

“At the present time, it would be responsible to inform families that this represents an additional option in care that they could consider. The decision to undergo fetal surgery is quite individual and different for every patient, but I think families need to know that this is one option in the armamentarium.”

View on The News

Early Results Promising

Although the results are promising, it is important to be cautious in generalizing the success of prenatal surgery for myelomeningoceles to a wider population, Dr. Joe Leigh Simpson and Dr. Michael F. Greene said.

“The study by Adzick and colleagues. is “a major step in the right direction, but the still suboptimal rates of poor neonatal outcome and high maternal risk necessitate the use of less invasive approaches if such procedures are to be widely implemented,” they said.

Results might be less successful for patients treated in centers that are not as experienced in the procedure, Dr. Simpson and Dr. Greene noted.

In addition, more research is needed to determine which fetuses are more likely to benefit from the surgery, and whether performing the procedure earlier in gestation would yield even better outcomes, they added.

DR. SIMPSON is at Florida International University in Miami, and DR. GREENE is at Massachusetts General Hospital in Boston. They made their comments in an accompanying editorial (N. Engl. J. Med. 2011 [doi:10.1056/NEJMe1101228]). Dr. Simpson disclosed that he serves on the advisory boards for Rarecells Diagnostics, Novartis, BioDx, and Bayer HealthCare. Dr. Greene is an associate editor for the New England Journal of Medicine.

Major Finding: Death or the need for a shunt was significantly less likely in the prenatal surgery group, compared with the postnatal surgery group (68% vs. 98%).

Data Source: In the Management of Myelomeningocele Study (MOMS), 183 volunteer women with singleton pregnancies were randomized to prenatal surgery before the 26th week of pregnancy or surgery for their infants after birth.

Disclosures: The study was sponsored by the National Institutes of Health.

Prenatal surgery to repair myelomeningoceles significantly reduced the need for shunts at 1 year of age and improved children's motor function at age 30 months, compared with children who had surgery after birth, based on data from a randomized trial of 183 pregnant women.

The results reflect data from 158 children who were evaluated at 12 months of age and 134 children evaluated at 30 months. Data collection is ongoing.

The surgery to repair the opening in the spine is usually performed after birth, but data from animal studies suggest that prenatal surgery could result in fewer complications, said Dr. N. Scott Adzick of the Children's Hospital of Philadelphia and his colleagues.

In the Management of Myelomeningocele Study (MOMS), 183 volunteer women with singleton pregnancies were randomized to prenatal surgery before the 26th week of pregnancy or surgery for their infants after birth (N. Engl. J. Med. 2011 [doi:10.1056/NEJMoa1014379]).

The children were examined for two primary outcomes. The first outcome, at age 12 months, was patient death or the need for a shunt. The second outcome, at age 30 months, was a composite score of motor function and brain development. The score was based on the Bayley Scales of Infant Development II (BSID-II) Mental Development Index and the difference between each child's actual ability and his or her expected motor function based on the severity of the spinal defects.

Death or the need for a shunt was significantly less likely in the prenatal surgery group, compared with the postnatal surgery group (68% vs. 98%). The rates of shunt placement were significantly lower in the prenatal surgery group, compared with the postnatal surgery group (40% vs. 82%).

All the fetuses in the study suffered from hindbrain herniation, in which the base of the brain is pulled into the spinal canal. But at 12 months, 36% of the children in the prenatal surgery group had no evidence of hindbrain herniation, compared with 4% in the postnatal surgery group. In addition, infants in the prenatal surgery group had lower rates of moderate or severe hindbrain herniation than did the postnatal surgery group (25% vs. 67%).

In addition, infants in the prenatal surgery group scored an average of 21% higher on measures of mental and motor function, compared with the postnatal surgery group, with primary outcome scores of 149 vs. 123, respectively.

Infants who underwent prenatal surgery were born at a mean 34.1 weeks of pregnancy, compared with a mean 37.3 weeks of pregnancy for the postnatal surgery group. Significantly more infants in the prenatal surgery group had respiratory distress syndrome, compared with the postnatal surgery group (21% vs. 6%).

In terms of secondary outcomes, children in the prenatal surgery group were more likely to be able to walk without crutches or other orthotic devices, compared with the postnatal surgery group (21% vs. 42%).

The mean age of the pregnant women was 29 years. Each fetus had a myelomeningocele located between the T1 and S1 vertebrae, evidence of hindbrain herniation, and a gestational age of 19.0-25.9 weeks. Exclusion criteria included body mass index of 35 kg/m

Approximately one-third of the women in the prenatal surgery group showed uterine thinning or an area of dehiscence at the time of delivery. Women undergoing prenatal surgery must understand that they will require a cesarean delivery for the current pregnancy and any future pregnancies, the researchers added.

Myelomeningocele, a severe form of spina bifida in which the backbone and spinal canal do not close completely before birth, occurs in approximately 4 of every 10,000 births in the United States, Dr. Diana L. Farmer, division chief of pediatric surgery at the University of California, San Francisco, said in a teleconference. Dr. Farmer was one of several researchers on the study who took part in a teleconference to present the study findings.

The study was not large enough to show an impact of gestational age on the results, but data collection is ongoing. “This is a priceless cohort of patients that we will follow for a longer period of time,” Dr. Farmer said. She noted that the National Institutes of Health has agreed to fund follow-up of the patients until age 6–9 years. Future studies will include whether the children in the prenatal surgery group remain free of shunts, maintain improved motor function, and require fewer procedures, compared with the postnatal group.

Although the surgery is highly specialized and more research is needed, the results suggest that ob.gyns. can recommend the procedure to appropriate patients at this time, Dr. Farmer said.

“At the present time, it would be responsible to inform families that this represents an additional option in care that they could consider. The decision to undergo fetal surgery is quite individual and different for every patient, but I think families need to know that this is one option in the armamentarium.”

View on The News

Early Results Promising

Although the results are promising, it is important to be cautious in generalizing the success of prenatal surgery for myelomeningoceles to a wider population, Dr. Joe Leigh Simpson and Dr. Michael F. Greene said.

“The study by Adzick and colleagues. is “a major step in the right direction, but the still suboptimal rates of poor neonatal outcome and high maternal risk necessitate the use of less invasive approaches if such procedures are to be widely implemented,” they said.

Results might be less successful for patients treated in centers that are not as experienced in the procedure, Dr. Simpson and Dr. Greene noted.

In addition, more research is needed to determine which fetuses are more likely to benefit from the surgery, and whether performing the procedure earlier in gestation would yield even better outcomes, they added.

DR. SIMPSON is at Florida International University in Miami, and DR. GREENE is at Massachusetts General Hospital in Boston. They made their comments in an accompanying editorial (N. Engl. J. Med. 2011 [doi:10.1056/NEJMe1101228]). Dr. Simpson disclosed that he serves on the advisory boards for Rarecells Diagnostics, Novartis, BioDx, and Bayer HealthCare. Dr. Greene is an associate editor for the New England Journal of Medicine.

Major Finding: Death or the need for a shunt was significantly less likely in the prenatal surgery group, compared with the postnatal surgery group (68% vs. 98%).

Data Source: In the Management of Myelomeningocele Study (MOMS), 183 volunteer women with singleton pregnancies were randomized to prenatal surgery before the 26th week of pregnancy or surgery for their infants after birth.

Disclosures: The study was sponsored by the National Institutes of Health.

Prenatal surgery to repair myelomeningoceles significantly reduced the need for shunts at 1 year of age and improved children's motor function at age 30 months, compared with children who had surgery after birth, based on data from a randomized trial of 183 pregnant women.

The results reflect data from 158 children who were evaluated at 12 months of age and 134 children evaluated at 30 months. Data collection is ongoing.

The surgery to repair the opening in the spine is usually performed after birth, but data from animal studies suggest that prenatal surgery could result in fewer complications, said Dr. N. Scott Adzick of the Children's Hospital of Philadelphia and his colleagues.

In the Management of Myelomeningocele Study (MOMS), 183 volunteer women with singleton pregnancies were randomized to prenatal surgery before the 26th week of pregnancy or surgery for their infants after birth (N. Engl. J. Med. 2011 [doi:10.1056/NEJMoa1014379]).

The children were examined for two primary outcomes. The first outcome, at age 12 months, was patient death or the need for a shunt. The second outcome, at age 30 months, was a composite score of motor function and brain development. The score was based on the Bayley Scales of Infant Development II (BSID-II) Mental Development Index and the difference between each child's actual ability and his or her expected motor function based on the severity of the spinal defects.

Death or the need for a shunt was significantly less likely in the prenatal surgery group, compared with the postnatal surgery group (68% vs. 98%). The rates of shunt placement were significantly lower in the prenatal surgery group, compared with the postnatal surgery group (40% vs. 82%).

All the fetuses in the study suffered from hindbrain herniation, in which the base of the brain is pulled into the spinal canal. But at 12 months, 36% of the children in the prenatal surgery group had no evidence of hindbrain herniation, compared with 4% in the postnatal surgery group. In addition, infants in the prenatal surgery group had lower rates of moderate or severe hindbrain herniation than did the postnatal surgery group (25% vs. 67%).

In addition, infants in the prenatal surgery group scored an average of 21% higher on measures of mental and motor function, compared with the postnatal surgery group, with primary outcome scores of 149 vs. 123, respectively.

Infants who underwent prenatal surgery were born at a mean 34.1 weeks of pregnancy, compared with a mean 37.3 weeks of pregnancy for the postnatal surgery group. Significantly more infants in the prenatal surgery group had respiratory distress syndrome, compared with the postnatal surgery group (21% vs. 6%).

In terms of secondary outcomes, children in the prenatal surgery group were more likely to be able to walk without crutches or other orthotic devices, compared with the postnatal surgery group (21% vs. 42%).

The mean age of the pregnant women was 29 years. Each fetus had a myelomeningocele located between the T1 and S1 vertebrae, evidence of hindbrain herniation, and a gestational age of 19.0-25.9 weeks. Exclusion criteria included body mass index of 35 kg/m

Approximately one-third of the women in the prenatal surgery group showed uterine thinning or an area of dehiscence at the time of delivery. Women undergoing prenatal surgery must understand that they will require a cesarean delivery for the current pregnancy and any future pregnancies, the researchers added.

Myelomeningocele, a severe form of spina bifida in which the backbone and spinal canal do not close completely before birth, occurs in approximately 4 of every 10,000 births in the United States, Dr. Diana L. Farmer, division chief of pediatric surgery at the University of California, San Francisco, said in a teleconference. Dr. Farmer was one of several researchers on the study who took part in a teleconference to present the study findings.

The study was not large enough to show an impact of gestational age on the results, but data collection is ongoing. “This is a priceless cohort of patients that we will follow for a longer period of time,” Dr. Farmer said. She noted that the National Institutes of Health has agreed to fund follow-up of the patients until age 6–9 years. Future studies will include whether the children in the prenatal surgery group remain free of shunts, maintain improved motor function, and require fewer procedures, compared with the postnatal group.

Although the surgery is highly specialized and more research is needed, the results suggest that ob.gyns. can recommend the procedure to appropriate patients at this time, Dr. Farmer said.

“At the present time, it would be responsible to inform families that this represents an additional option in care that they could consider. The decision to undergo fetal surgery is quite individual and different for every patient, but I think families need to know that this is one option in the armamentarium.”

View on The News

Early Results Promising

Although the results are promising, it is important to be cautious in generalizing the success of prenatal surgery for myelomeningoceles to a wider population, Dr. Joe Leigh Simpson and Dr. Michael F. Greene said.

“The study by Adzick and colleagues. is “a major step in the right direction, but the still suboptimal rates of poor neonatal outcome and high maternal risk necessitate the use of less invasive approaches if such procedures are to be widely implemented,” they said.

Results might be less successful for patients treated in centers that are not as experienced in the procedure, Dr. Simpson and Dr. Greene noted.

In addition, more research is needed to determine which fetuses are more likely to benefit from the surgery, and whether performing the procedure earlier in gestation would yield even better outcomes, they added.

DR. SIMPSON is at Florida International University in Miami, and DR. GREENE is at Massachusetts General Hospital in Boston. They made their comments in an accompanying editorial (N. Engl. J. Med. 2011 [doi:10.1056/NEJMe1101228]). Dr. Simpson disclosed that he serves on the advisory boards for Rarecells Diagnostics, Novartis, BioDx, and Bayer HealthCare. Dr. Greene is an associate editor for the New England Journal of Medicine.

Prenatal surgery to repair myelomeningoceles significantly reduced the need for shunts at 1 year of age and improved children's motor function at age 30 months, compared with children who had surgery after birth, based on data from a randomized trial of 183 pregnant women.

The results, published online, reflect data from 158 children who were evaluated at 12 months of age and 134 children evaluated at 30 months. Data collection is ongoing.

Surgery to repair the opening in the spine is usually performed after birth, but data from animal studies suggest that prenatal surgery could result in fewer complications, said Dr. N. Scott Adzick of the Children's Hospital of Philadelphia and his colleagues.

In the Management of Myelomeningocele Study (MOMS), 183 volunteer women with singleton pregnancies were randomized to prenatal surgery before the 26th week of pregnancy or surgery for their infants after birth (N. Engl. J. Med. 2011 Feb. 9 [doi:10.1056/NEJMoa 1014379

The children were examined for two primary outcomes. The first outcome, at age 12 months, was patient death or the need for a shunt. The second outcome, at age 30 months, was a composite score of motor function and brain development. The score was based on the Bayley Scales of Infant Development II (BSID-II) Mental Development Index and the difference between each child's actual ability and their expected motor function based on the severity of their spinal defect.

Death or the need for a shunt was significantly less likely in the prenatal surgery group, compared with the postnatal surgery group (68% vs. 98%). The rates of shunt placement were significantly lower for the prenatal surgery group, compared with the postnatal surgery group (40% vs. 82%).

All the fetuses in the study suffered from hindbrain herniation, in which the base of the brain is pulled into the spinal canal.

But at 12 months, 36% of the children in the prenatal surgery group had no evidence of hindbrain herniation, compared with 4% in the postnatal surgery group. Infants in the prenatal surgery group also had lower rates of moderate or severe hindbrain herniation than did the postnatal surgery group (25% vs. 67%).

In addition, infants in the prenatal surgery group scored an average of 21% higher on measures of mental and motor function, compared with infants in the postnatal surgery group, with primary outcome scores of 149 vs. 123, respectively.

Infants who underwent prenatal surgery were born at a mean 34.1 weeks of pregnancy, compared with a mean 37.3 weeks of pregnancy for the postnatal surgery group.

Significantly more infants in the prenatal surgery group had respiratory distress syndrome, compared with the postnatal surgery group (21% vs. 6%).

In terms of secondary outcomes, children in the prenatal surgery group were more likely to be able to walk without crutches or other orthotic devices, compared with the postnatal surgery group (21% vs. 42%).

The mean age of the pregnant women was 29 years. Each fetus had a myelomeningocele located between the T1 and S1 vertebrae, evidence of hindbrain herniation, and a gestational age of 19.0–25.9 weeks.

Exclusion criteria included a body mass index of 35 kg/m

Approximately one-third of the women in the prenatal surgery group showed uterine thinning or an area of dehiscence at the time of delivery. Women undergoing prenatal surgery must understand that they will require a cesarean delivery for the current pregnancy and any future pregnancies, the authors added.

The study was sponsored by the National Institutes of Health.

View on the News

Major Step in the Right Direction

Although the results are promising, it is important to be cautious in generalizing the success of prenatal surgery for myelomeningoceles to a wider population, Dr. Joe Leigh Simpson and Dr. Michael F. Greene said.

“The study by Adzick et al. is a major step in the right direction, but the still suboptimal rates of poor neonatal outcome and high maternal risk necessitate the use of less invasive approaches if such procedures are to be widely implemented,” they said.

Results might be less successful for patients treated in centers that are not as experienced in the procedure, Dr. Simpson and Dr. Greene noted.

In addition, more research is needed to determine which fetuses are more likely to benefit from the surgery, and whether performing the procedure earlier in gestation would yield even better outcomes, they added.

DR. SIMPSON is at Florida International University in Miami, Fla., and DR. GREENE is at Massachusetts General Hospital in Boston. They made their comments in an accompanying editorial (New Eng. J. Med. 2011 [epub

doi: 10.1056/NEJMe1101228

Prenatal surgery to repair myelomeningoceles significantly reduced the need for shunts at 1 year of age and improved children's motor function at age 30 months, compared with children who had surgery after birth, based on data from a randomized trial of 183 pregnant women.

The results, published online, reflect data from 158 children who were evaluated at 12 months of age and 134 children evaluated at 30 months. Data collection is ongoing.

Surgery to repair the opening in the spine is usually performed after birth, but data from animal studies suggest that prenatal surgery could result in fewer complications, said Dr. N. Scott Adzick of the Children's Hospital of Philadelphia and his colleagues.

In the Management of Myelomeningocele Study (MOMS), 183 volunteer women with singleton pregnancies were randomized to prenatal surgery before the 26th week of pregnancy or surgery for their infants after birth (N. Engl. J. Med. 2011 Feb. 9 [doi:10.1056/NEJMoa 1014379

The children were examined for two primary outcomes. The first outcome, at age 12 months, was patient death or the need for a shunt. The second outcome, at age 30 months, was a composite score of motor function and brain development. The score was based on the Bayley Scales of Infant Development II (BSID-II) Mental Development Index and the difference between each child's actual ability and their expected motor function based on the severity of their spinal defect.

Death or the need for a shunt was significantly less likely in the prenatal surgery group, compared with the postnatal surgery group (68% vs. 98%). The rates of shunt placement were significantly lower for the prenatal surgery group, compared with the postnatal surgery group (40% vs. 82%).

All the fetuses in the study suffered from hindbrain herniation, in which the base of the brain is pulled into the spinal canal.

But at 12 months, 36% of the children in the prenatal surgery group had no evidence of hindbrain herniation, compared with 4% in the postnatal surgery group. Infants in the prenatal surgery group also had lower rates of moderate or severe hindbrain herniation than did the postnatal surgery group (25% vs. 67%).

In addition, infants in the prenatal surgery group scored an average of 21% higher on measures of mental and motor function, compared with infants in the postnatal surgery group, with primary outcome scores of 149 vs. 123, respectively.

Infants who underwent prenatal surgery were born at a mean 34.1 weeks of pregnancy, compared with a mean 37.3 weeks of pregnancy for the postnatal surgery group.

Significantly more infants in the prenatal surgery group had respiratory distress syndrome, compared with the postnatal surgery group (21% vs. 6%).

In terms of secondary outcomes, children in the prenatal surgery group were more likely to be able to walk without crutches or other orthotic devices, compared with the postnatal surgery group (21% vs. 42%).

The mean age of the pregnant women was 29 years. Each fetus had a myelomeningocele located between the T1 and S1 vertebrae, evidence of hindbrain herniation, and a gestational age of 19.0–25.9 weeks.

Exclusion criteria included a body mass index of 35 kg/m

Approximately one-third of the women in the prenatal surgery group showed uterine thinning or an area of dehiscence at the time of delivery. Women undergoing prenatal surgery must understand that they will require a cesarean delivery for the current pregnancy and any future pregnancies, the authors added.

The study was sponsored by the National Institutes of Health.

View on the News

Major Step in the Right Direction

Although the results are promising, it is important to be cautious in generalizing the success of prenatal surgery for myelomeningoceles to a wider population, Dr. Joe Leigh Simpson and Dr. Michael F. Greene said.

“The study by Adzick et al. is a major step in the right direction, but the still suboptimal rates of poor neonatal outcome and high maternal risk necessitate the use of less invasive approaches if such procedures are to be widely implemented,” they said.

Results might be less successful for patients treated in centers that are not as experienced in the procedure, Dr. Simpson and Dr. Greene noted.

In addition, more research is needed to determine which fetuses are more likely to benefit from the surgery, and whether performing the procedure earlier in gestation would yield even better outcomes, they added.

DR. SIMPSON is at Florida International University in Miami, Fla., and DR. GREENE is at Massachusetts General Hospital in Boston. They made their comments in an accompanying editorial (New Eng. J. Med. 2011 [epub

doi: 10.1056/NEJMe1101228

Prenatal surgery to repair myelomeningoceles significantly reduced the need for shunts at 1 year of age and improved children's motor function at age 30 months, compared with children who had surgery after birth, based on data from a randomized trial of 183 pregnant women.

The results, published online, reflect data from 158 children who were evaluated at 12 months of age and 134 children evaluated at 30 months. Data collection is ongoing.

Surgery to repair the opening in the spine is usually performed after birth, but data from animal studies suggest that prenatal surgery could result in fewer complications, said Dr. N. Scott Adzick of the Children's Hospital of Philadelphia and his colleagues.

In the Management of Myelomeningocele Study (MOMS), 183 volunteer women with singleton pregnancies were randomized to prenatal surgery before the 26th week of pregnancy or surgery for their infants after birth (N. Engl. J. Med. 2011 Feb. 9 [doi:10.1056/NEJMoa 1014379

The children were examined for two primary outcomes. The first outcome, at age 12 months, was patient death or the need for a shunt. The second outcome, at age 30 months, was a composite score of motor function and brain development. The score was based on the Bayley Scales of Infant Development II (BSID-II) Mental Development Index and the difference between each child's actual ability and their expected motor function based on the severity of their spinal defect.

Death or the need for a shunt was significantly less likely in the prenatal surgery group, compared with the postnatal surgery group (68% vs. 98%). The rates of shunt placement were significantly lower for the prenatal surgery group, compared with the postnatal surgery group (40% vs. 82%).

All the fetuses in the study suffered from hindbrain herniation, in which the base of the brain is pulled into the spinal canal.

But at 12 months, 36% of the children in the prenatal surgery group had no evidence of hindbrain herniation, compared with 4% in the postnatal surgery group. Infants in the prenatal surgery group also had lower rates of moderate or severe hindbrain herniation than did the postnatal surgery group (25% vs. 67%).

In addition, infants in the prenatal surgery group scored an average of 21% higher on measures of mental and motor function, compared with infants in the postnatal surgery group, with primary outcome scores of 149 vs. 123, respectively.

Infants who underwent prenatal surgery were born at a mean 34.1 weeks of pregnancy, compared with a mean 37.3 weeks of pregnancy for the postnatal surgery group.

Significantly more infants in the prenatal surgery group had respiratory distress syndrome, compared with the postnatal surgery group (21% vs. 6%).

In terms of secondary outcomes, children in the prenatal surgery group were more likely to be able to walk without crutches or other orthotic devices, compared with the postnatal surgery group (21% vs. 42%).

The mean age of the pregnant women was 29 years. Each fetus had a myelomeningocele located between the T1 and S1 vertebrae, evidence of hindbrain herniation, and a gestational age of 19.0–25.9 weeks.

Exclusion criteria included a body mass index of 35 kg/m

Approximately one-third of the women in the prenatal surgery group showed uterine thinning or an area of dehiscence at the time of delivery. Women undergoing prenatal surgery must understand that they will require a cesarean delivery for the current pregnancy and any future pregnancies, the authors added.

The study was sponsored by the National Institutes of Health.

View on the News

Major Step in the Right Direction

Although the results are promising, it is important to be cautious in generalizing the success of prenatal surgery for myelomeningoceles to a wider population, Dr. Joe Leigh Simpson and Dr. Michael F. Greene said.

“The study by Adzick et al. is a major step in the right direction, but the still suboptimal rates of poor neonatal outcome and high maternal risk necessitate the use of less invasive approaches if such procedures are to be widely implemented,” they said.

Results might be less successful for patients treated in centers that are not as experienced in the procedure, Dr. Simpson and Dr. Greene noted.

In addition, more research is needed to determine which fetuses are more likely to benefit from the surgery, and whether performing the procedure earlier in gestation would yield even better outcomes, they added.

DR. SIMPSON is at Florida International University in Miami, Fla., and DR. GREENE is at Massachusetts General Hospital in Boston. They made their comments in an accompanying editorial (New Eng. J. Med. 2011 [epub

doi: 10.1056/NEJMe1101228

Inactivated flu vaccine is an option for patients with autoimmune inflammatory rheumatic diseases, but any vaccination should occur during periods of stable disease, according to new recommendations from the European League Against Rheumatism.

Patients with autoimmune inflammatory rheumatic diseases (AIIRDs) are at increased risk for infections, but vaccination can cause flares of the disease, wrote Dr. Sander van Assen of the University Medical Center Groningen (the Netherlands), and colleagues. To help rheum-atologists make informed decisions about patient vaccinations, EULAR convened a task force that developed 13 evidence-based recommendations (Ann. Rheum. Dis. 2011;70:414-22).

“For the most part, such recommendations have been lacking and the field has been changing very quickly as new drugs are developed and roll into the marketplace,” according to infectious disease specialist Dr. Kevin Winthrop of the Oregon Health and Science University in Portland.

“New drugs and new vaccines make these recommendations a moving target, and it was extremely important for the expert group to sit down, review the latest data, and codify their thoughts.

“For the most part, there is a lack of data regarding the efficacy and utility of many of these vaccines in these patients, and it is often unclear how their immunosuppressive medications and underlying diseases affect vaccine responsiveness.

“With certain biologics, we know that some vaccines are diminished in their immunogenicity and it is important to clarify for physicians when these vaccines can and should be given,” he said. The expert committee members represented 11 European countries.

They reviewed studies from 1966 through October 2009, as well as abstracts presented at EULAR in 2008 and 2009 and at the American College of Rheumatology annual meeting in 2007 and 2008.

Their evidence-based recommendations on the use of vaccination in adults with AIIRDs include:

▸ Assess vaccination status of an AIIRD patient at an initial work-up.

▸ Vaccinate patients during times of stable disease whenever possible.

▸ Avoid live, attenuated vaccines whenever possible in immunosuppressed patients.

▸ Vaccinate patients before starting B-cell–depleting biologic therapy if possible, but vaccines can be given during the use of DMARDs and TNFi agents.

▸ Strongly consider inactivated flu vaccine for patients with AIIRD.

▸ Strongly consider PPV23 (23-valent pneumococcal polysaccharide vaccination) for AIIRD patients.

▸ Vaccinate AIIRD patients for tetanus toxoid in accordance with recommendations for the general population.

▸ Consider herpes zoster vaccination in AIIRD patients.

▸ Consider human papillomavirus vaccination for selected patients with AIIRD (young women with systemic lupus erythematosus up to age 25 years).

▸ Vaccinate hyposplenic or asplenic patients who have AIIRD with vaccines for influenza, pneumococcal, Haemophilus influenzae type b, and meningococcal C.

▸ Vaccinate only at-risk AIIRD patients for hepatitis A and/or hepatitis B.

▸ Vaccinate traveling AIIRD patients according to the general rules for travelers, but avoid the use of live, attenuated vaccines whenever possible in those patients who are immunosuppressed.

▸ Do not vaccinate AIIRD patients with the BCG vaccine.

In an interview with

“Clearly, we need better information regarding the risk of vaccine-preventable diseases in this population, as well as the outcomes of such infections and how these outcomes are modulated by certain immunosuppressive therapies [that are used in patients with AIIRDs].

“Such research would help better clarify the potential benefits of vaccination.

“On the adverse event side, further research is certainly necessary to better understand the risk of such vaccines (particularly live vaccines) and how that risk is modulated by immunosuppressive therapies, most notably biologic therapies.

“Lastly, studies evaluating the safety and efficacy of new vaccines [such as zoster vaccine and the new conjugated pneumococcal vaccine PCV13] in the context of existing and new biologic therapies remains an important area of study,” Dr. Winthrop noted.

The study that produced the guidelines was funded by the European League Against Rheumatism. The researchers had no financial conflicts to disclose. Dr. Winthrop said he had no relevant financial disclosures to make.

View on the News

Zoster Vaccine Needs Evaluation in AIIRD

Because of the immune dysregulation seen inpatients with AIIRD, some vaccine-preventable infections seem to be more common or more severe. Yet the immunosuppressive therapies given to these patients can blunt the vaccine efficacy or, theoretically, be associated with primary infection from certain live and attenuated vaccines. There is only a limited amount of information obtained in the controlled-trial setting to provide guidance. Hence, a structured review of published data with expert discussion is of value in helping to provide guidance as to when specific vaccination is either appropriate or should be avoided. This is a common question from our patients: “Should I get [a specific vaccine]?”

The likelihood of a patient's getting a severe infection without having gotten a vaccine, the degree of immunosuppression, and the safety of the vaccine are all factors that rheumatologists should consider when counseling patients about vaccinations. Influenza and pneumococcal vaccine decisions are easy: Efficacy may be blunted in some settings, but the vaccines are safe and any potential efficacy would be beneficial. A decision to vaccinate patients who are about to receive rituximab must take into consideration the data that B-cell–directed therapy clearly lowers the efficacy of the vaccine, so vaccination ideally should be given prior to this therapy. This takes some planning and careful review of the patient's vaccination history in advance. We need outcome-based studies of clinical, not just serologic, efficacy of certain vaccines in the setting of immunosuppression. I would particularly like to see formal studies on safety and efficacy of the zoster vaccine.

Inactivated flu vaccine is an option for patients with autoimmune inflammatory rheumatic diseases, but any vaccination should occur during periods of stable disease, according to new recommendations from the European League Against Rheumatism.

Patients with autoimmune inflammatory rheumatic diseases (AIIRDs) are at increased risk for infections, but vaccination can cause flares of the disease, wrote Dr. Sander van Assen of the University Medical Center Groningen (the Netherlands), and colleagues. To help rheum-atologists make informed decisions about patient vaccinations, EULAR convened a task force that developed 13 evidence-based recommendations (Ann. Rheum. Dis. 2011;70:414-22).

“For the most part, such recommendations have been lacking and the field has been changing very quickly as new drugs are developed and roll into the marketplace,” according to infectious disease specialist Dr. Kevin Winthrop of the Oregon Health and Science University in Portland.

“New drugs and new vaccines make these recommendations a moving target, and it was extremely important for the expert group to sit down, review the latest data, and codify their thoughts.

“For the most part, there is a lack of data regarding the efficacy and utility of many of these vaccines in these patients, and it is often unclear how their immunosuppressive medications and underlying diseases affect vaccine responsiveness.

“With certain biologics, we know that some vaccines are diminished in their immunogenicity and it is important to clarify for physicians when these vaccines can and should be given,” he said. The expert committee members represented 11 European countries.

They reviewed studies from 1966 through October 2009, as well as abstracts presented at EULAR in 2008 and 2009 and at the American College of Rheumatology annual meeting in 2007 and 2008.

Their evidence-based recommendations on the use of vaccination in adults with AIIRDs include:

▸ Assess vaccination status of an AIIRD patient at an initial work-up.

▸ Vaccinate patients during times of stable disease whenever possible.

▸ Avoid live, attenuated vaccines whenever possible in immunosuppressed patients.

▸ Vaccinate patients before starting B-cell–depleting biologic therapy if possible, but vaccines can be given during the use of DMARDs and TNFi agents.

▸ Strongly consider inactivated flu vaccine for patients with AIIRD.

▸ Strongly consider PPV23 (23-valent pneumococcal polysaccharide vaccination) for AIIRD patients.

▸ Vaccinate AIIRD patients for tetanus toxoid in accordance with recommendations for the general population.

▸ Consider herpes zoster vaccination in AIIRD patients.

▸ Consider human papillomavirus vaccination for selected patients with AIIRD (young women with systemic lupus erythematosus up to age 25 years).

▸ Vaccinate hyposplenic or asplenic patients who have AIIRD with vaccines for influenza, pneumococcal, Haemophilus influenzae type b, and meningococcal C.

▸ Vaccinate only at-risk AIIRD patients for hepatitis A and/or hepatitis B.

▸ Vaccinate traveling AIIRD patients according to the general rules for travelers, but avoid the use of live, attenuated vaccines whenever possible in those patients who are immunosuppressed.

▸ Do not vaccinate AIIRD patients with the BCG vaccine.

In an interview with

“Clearly, we need better information regarding the risk of vaccine-preventable diseases in this population, as well as the outcomes of such infections and how these outcomes are modulated by certain immunosuppressive therapies [that are used in patients with AIIRDs].

“Such research would help better clarify the potential benefits of vaccination.

“On the adverse event side, further research is certainly necessary to better understand the risk of such vaccines (particularly live vaccines) and how that risk is modulated by immunosuppressive therapies, most notably biologic therapies.

“Lastly, studies evaluating the safety and efficacy of new vaccines [such as zoster vaccine and the new conjugated pneumococcal vaccine PCV13] in the context of existing and new biologic therapies remains an important area of study,” Dr. Winthrop noted.

The study that produced the guidelines was funded by the European League Against Rheumatism. The researchers had no financial conflicts to disclose. Dr. Winthrop said he had no relevant financial disclosures to make.

View on the News

Zoster Vaccine Needs Evaluation in AIIRD

Because of the immune dysregulation seen inpatients with AIIRD, some vaccine-preventable infections seem to be more common or more severe. Yet the immunosuppressive therapies given to these patients can blunt the vaccine efficacy or, theoretically, be associated with primary infection from certain live and attenuated vaccines. There is only a limited amount of information obtained in the controlled-trial setting to provide guidance. Hence, a structured review of published data with expert discussion is of value in helping to provide guidance as to when specific vaccination is either appropriate or should be avoided. This is a common question from our patients: “Should I get [a specific vaccine]?”

The likelihood of a patient's getting a severe infection without having gotten a vaccine, the degree of immunosuppression, and the safety of the vaccine are all factors that rheumatologists should consider when counseling patients about vaccinations. Influenza and pneumococcal vaccine decisions are easy: Efficacy may be blunted in some settings, but the vaccines are safe and any potential efficacy would be beneficial. A decision to vaccinate patients who are about to receive rituximab must take into consideration the data that B-cell–directed therapy clearly lowers the efficacy of the vaccine, so vaccination ideally should be given prior to this therapy. This takes some planning and careful review of the patient's vaccination history in advance. We need outcome-based studies of clinical, not just serologic, efficacy of certain vaccines in the setting of immunosuppression. I would particularly like to see formal studies on safety and efficacy of the zoster vaccine.

Inactivated flu vaccine is an option for patients with autoimmune inflammatory rheumatic diseases, but any vaccination should occur during periods of stable disease, according to new recommendations from the European League Against Rheumatism.

Patients with autoimmune inflammatory rheumatic diseases (AIIRDs) are at increased risk for infections, but vaccination can cause flares of the disease, wrote Dr. Sander van Assen of the University Medical Center Groningen (the Netherlands), and colleagues. To help rheum-atologists make informed decisions about patient vaccinations, EULAR convened a task force that developed 13 evidence-based recommendations (Ann. Rheum. Dis. 2011;70:414-22).

“For the most part, such recommendations have been lacking and the field has been changing very quickly as new drugs are developed and roll into the marketplace,” according to infectious disease specialist Dr. Kevin Winthrop of the Oregon Health and Science University in Portland.

“New drugs and new vaccines make these recommendations a moving target, and it was extremely important for the expert group to sit down, review the latest data, and codify their thoughts.

“For the most part, there is a lack of data regarding the efficacy and utility of many of these vaccines in these patients, and it is often unclear how their immunosuppressive medications and underlying diseases affect vaccine responsiveness.

“With certain biologics, we know that some vaccines are diminished in their immunogenicity and it is important to clarify for physicians when these vaccines can and should be given,” he said. The expert committee members represented 11 European countries.

They reviewed studies from 1966 through October 2009, as well as abstracts presented at EULAR in 2008 and 2009 and at the American College of Rheumatology annual meeting in 2007 and 2008.

Their evidence-based recommendations on the use of vaccination in adults with AIIRDs include:

▸ Assess vaccination status of an AIIRD patient at an initial work-up.

▸ Vaccinate patients during times of stable disease whenever possible.

▸ Avoid live, attenuated vaccines whenever possible in immunosuppressed patients.

▸ Vaccinate patients before starting B-cell–depleting biologic therapy if possible, but vaccines can be given during the use of DMARDs and TNFi agents.

▸ Strongly consider inactivated flu vaccine for patients with AIIRD.

▸ Strongly consider PPV23 (23-valent pneumococcal polysaccharide vaccination) for AIIRD patients.

▸ Vaccinate AIIRD patients for tetanus toxoid in accordance with recommendations for the general population.

▸ Consider herpes zoster vaccination in AIIRD patients.

▸ Consider human papillomavirus vaccination for selected patients with AIIRD (young women with systemic lupus erythematosus up to age 25 years).

▸ Vaccinate hyposplenic or asplenic patients who have AIIRD with vaccines for influenza, pneumococcal, Haemophilus influenzae type b, and meningococcal C.

▸ Vaccinate only at-risk AIIRD patients for hepatitis A and/or hepatitis B.

▸ Vaccinate traveling AIIRD patients according to the general rules for travelers, but avoid the use of live, attenuated vaccines whenever possible in those patients who are immunosuppressed.

▸ Do not vaccinate AIIRD patients with the BCG vaccine.

In an interview with

“Clearly, we need better information regarding the risk of vaccine-preventable diseases in this population, as well as the outcomes of such infections and how these outcomes are modulated by certain immunosuppressive therapies [that are used in patients with AIIRDs].

“Such research would help better clarify the potential benefits of vaccination.

“On the adverse event side, further research is certainly necessary to better understand the risk of such vaccines (particularly live vaccines) and how that risk is modulated by immunosuppressive therapies, most notably biologic therapies.

“Lastly, studies evaluating the safety and efficacy of new vaccines [such as zoster vaccine and the new conjugated pneumococcal vaccine PCV13] in the context of existing and new biologic therapies remains an important area of study,” Dr. Winthrop noted.

The study that produced the guidelines was funded by the European League Against Rheumatism. The researchers had no financial conflicts to disclose. Dr. Winthrop said he had no relevant financial disclosures to make.

View on the News

Zoster Vaccine Needs Evaluation in AIIRD

Because of the immune dysregulation seen inpatients with AIIRD, some vaccine-preventable infections seem to be more common or more severe. Yet the immunosuppressive therapies given to these patients can blunt the vaccine efficacy or, theoretically, be associated with primary infection from certain live and attenuated vaccines. There is only a limited amount of information obtained in the controlled-trial setting to provide guidance. Hence, a structured review of published data with expert discussion is of value in helping to provide guidance as to when specific vaccination is either appropriate or should be avoided. This is a common question from our patients: “Should I get [a specific vaccine]?”

The likelihood of a patient's getting a severe infection without having gotten a vaccine, the degree of immunosuppression, and the safety of the vaccine are all factors that rheumatologists should consider when counseling patients about vaccinations. Influenza and pneumococcal vaccine decisions are easy: Efficacy may be blunted in some settings, but the vaccines are safe and any potential efficacy would be beneficial. A decision to vaccinate patients who are about to receive rituximab must take into consideration the data that B-cell–directed therapy clearly lowers the efficacy of the vaccine, so vaccination ideally should be given prior to this therapy. This takes some planning and careful review of the patient's vaccination history in advance. We need outcome-based studies of clinical, not just serologic, efficacy of certain vaccines in the setting of immunosuppression. I would particularly like to see formal studies on safety and efficacy of the zoster vaccine.

Major Finding: Methotrexate combined with other DMARDs prolonged anti-TNF therapy adherence in rheumatoid arthritis patients

Data Source: A prospective, observational cohort study of 10,396 adults with RA.

Disclosures: The study was funded by the British Society for Rheumatology, which receives some income from pharmaceutical companies including Abbott Laboratories, Amgen, Roche, Schering-Plough, and Wyeth Pharmaceuticals.

Patients who received methotrexate in combination with other disease-modifying antirheumatic drugs were significantly more likely to remain on anti–tumor necrosis factor therapy than were patients who received methotrexate monotherapy or other DMARDs without methotrexate, based on data from more than 10,000 patients in the British Society for Rheumatology Biologics Register.

Previous studies have examined the impact of DMARDs on the continuation of anti-TNF therapy, but most of these did not compare the effects of specific DMARDs, said Dr. Moetaza M. Soliman of the University of Manchester (England) and colleagues (Ann. Rheum. Dis. 2011 Feb. 17 [doi:10.1136/ard.2010.139774]).

After 5 years of follow-up, patients who received methotrexate (MTX) in combination with either sulfasalazine or hydroxychloroquine or a combination of the two agents were significantly less likely to discontinue anti-TNF therapy, compared with those who received MTX alone. The adjusted hazard ratios were 0.76, 0.81, and 0.80, respectively, compared with methotrexate alone.

Patients who received no DMARDs were 40% more likely to discontinue anti-TNF, compared with those who received MTX. Patients who received leflunomide or sulfasalazine were 41% and 23% more likely, respectively, to discontinue anti-TNF therapy, compared with those who received MTX.

The study population included 3,339 patients receiving no DMARDs, 4,418 on MTX, 610 taking leflunomide, 308 receiving sulfasalazine, 902 on MTX plus sulfasalazine, 401 taking MTX plus hydroxychloroquine, and 418 on MTX plus a sulfasalazine and hydroxychloroquine combination. The average age of the patients was 56 years, and the average disease duration was 13 years.

The results were similar when the researchers controlled for reasons for discontinuation, including adverse events and lack of efficacy. The results support the use of MTX alone or in combination with other DMARDs as a way to extend compliance with anti-TNF therapy, the researchers noted.

Major Finding: Methotrexate combined with other DMARDs prolonged anti-TNF therapy adherence in rheumatoid arthritis patients

Data Source: A prospective, observational cohort study of 10,396 adults with RA.

Disclosures: The study was funded by the British Society for Rheumatology, which receives some income from pharmaceutical companies including Abbott Laboratories, Amgen, Roche, Schering-Plough, and Wyeth Pharmaceuticals.

Patients who received methotrexate in combination with other disease-modifying antirheumatic drugs were significantly more likely to remain on anti–tumor necrosis factor therapy than were patients who received methotrexate monotherapy or other DMARDs without methotrexate, based on data from more than 10,000 patients in the British Society for Rheumatology Biologics Register.

Previous studies have examined the impact of DMARDs on the continuation of anti-TNF therapy, but most of these did not compare the effects of specific DMARDs, said Dr. Moetaza M. Soliman of the University of Manchester (England) and colleagues (Ann. Rheum. Dis. 2011 Feb. 17 [doi:10.1136/ard.2010.139774]).

After 5 years of follow-up, patients who received methotrexate (MTX) in combination with either sulfasalazine or hydroxychloroquine or a combination of the two agents were significantly less likely to discontinue anti-TNF therapy, compared with those who received MTX alone. The adjusted hazard ratios were 0.76, 0.81, and 0.80, respectively, compared with methotrexate alone.

Patients who received no DMARDs were 40% more likely to discontinue anti-TNF, compared with those who received MTX. Patients who received leflunomide or sulfasalazine were 41% and 23% more likely, respectively, to discontinue anti-TNF therapy, compared with those who received MTX.

The study population included 3,339 patients receiving no DMARDs, 4,418 on MTX, 610 taking leflunomide, 308 receiving sulfasalazine, 902 on MTX plus sulfasalazine, 401 taking MTX plus hydroxychloroquine, and 418 on MTX plus a sulfasalazine and hydroxychloroquine combination. The average age of the patients was 56 years, and the average disease duration was 13 years.

The results were similar when the researchers controlled for reasons for discontinuation, including adverse events and lack of efficacy. The results support the use of MTX alone or in combination with other DMARDs as a way to extend compliance with anti-TNF therapy, the researchers noted.

Major Finding: Methotrexate combined with other DMARDs prolonged anti-TNF therapy adherence in rheumatoid arthritis patients

Data Source: A prospective, observational cohort study of 10,396 adults with RA.

Disclosures: The study was funded by the British Society for Rheumatology, which receives some income from pharmaceutical companies including Abbott Laboratories, Amgen, Roche, Schering-Plough, and Wyeth Pharmaceuticals.

Patients who received methotrexate in combination with other disease-modifying antirheumatic drugs were significantly more likely to remain on anti–tumor necrosis factor therapy than were patients who received methotrexate monotherapy or other DMARDs without methotrexate, based on data from more than 10,000 patients in the British Society for Rheumatology Biologics Register.

Previous studies have examined the impact of DMARDs on the continuation of anti-TNF therapy, but most of these did not compare the effects of specific DMARDs, said Dr. Moetaza M. Soliman of the University of Manchester (England) and colleagues (Ann. Rheum. Dis. 2011 Feb. 17 [doi:10.1136/ard.2010.139774]).

After 5 years of follow-up, patients who received methotrexate (MTX) in combination with either sulfasalazine or hydroxychloroquine or a combination of the two agents were significantly less likely to discontinue anti-TNF therapy, compared with those who received MTX alone. The adjusted hazard ratios were 0.76, 0.81, and 0.80, respectively, compared with methotrexate alone.

Patients who received no DMARDs were 40% more likely to discontinue anti-TNF, compared with those who received MTX. Patients who received leflunomide or sulfasalazine were 41% and 23% more likely, respectively, to discontinue anti-TNF therapy, compared with those who received MTX.

The study population included 3,339 patients receiving no DMARDs, 4,418 on MTX, 610 taking leflunomide, 308 receiving sulfasalazine, 902 on MTX plus sulfasalazine, 401 taking MTX plus hydroxychloroquine, and 418 on MTX plus a sulfasalazine and hydroxychloroquine combination. The average age of the patients was 56 years, and the average disease duration was 13 years.

The results were similar when the researchers controlled for reasons for discontinuation, including adverse events and lack of efficacy. The results support the use of MTX alone or in combination with other DMARDs as a way to extend compliance with anti-TNF therapy, the researchers noted.

Recent evidence suggests that traumatic brain injury is a chronic, rather than an acute condition, which can have psychological effects on patients and their families indefinitely. In this video, Dr. David K. Menon of the University of Cambridge discusses the challenges of assessing and treating TBI as a chronic disease.

Recent evidence suggests that traumatic brain injury is a chronic, rather than an acute condition, which can have psychological effects on patients and their families indefinitely. In this video, Dr. David K. Menon of the University of Cambridge discusses the challenges of assessing and treating TBI as a chronic disease.

Recent evidence suggests that traumatic brain injury is a chronic, rather than an acute condition, which can have psychological effects on patients and their families indefinitely. In this video, Dr. David K. Menon of the University of Cambridge discusses the challenges of assessing and treating TBI as a chronic disease.

Recent evidence suggests that traumatic brain injury is a chronic, rather than an acute condition, which can have psychological effects on patients and their families indefinitely. In this video, Dr. David K. Menon of the University of Cambridge discusses the challenges of assessing and treating TBI as a chronic disease.

Recent evidence suggests that traumatic brain injury is a chronic, rather than an acute condition, which can have psychological effects on patients and their families indefinitely. In this video, Dr. David K. Menon of the University of Cambridge discusses the challenges of assessing and treating TBI as a chronic disease.

Recent evidence suggests that traumatic brain injury is a chronic, rather than an acute condition, which can have psychological effects on patients and their families indefinitely. In this video, Dr. David K. Menon of the University of Cambridge discusses the challenges of assessing and treating TBI as a chronic disease.

Recent evidence suggests that traumatic brain injury is a chronic, rather than an acute condition, which can have psychological effects on patients and their families indefinitely. In this video, Dr. David K. Menon of the University of Cambridge discusses the challenges of assessing and treating TBI as a chronic disease.

Recent evidence suggests that traumatic brain injury is a chronic, rather than an acute condition, which can have psychological effects on patients and their families indefinitely. In this video, Dr. David K. Menon of the University of Cambridge discusses the challenges of assessing and treating TBI as a chronic disease.

Recent evidence suggests that traumatic brain injury is a chronic, rather than an acute condition, which can have psychological effects on patients and their families indefinitely. In this video, Dr. David K. Menon of the University of Cambridge discusses the challenges of assessing and treating TBI as a chronic disease.

The transition of adolescents with congenital heart disease from pediatric to adult care should be targeted to the teen’s emotional and physical developmental status, according to a scientific statement from the American Heart Association.

The statement, "Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues," was published online Feb. 28 in Circulation.

More children with congenital heart disease are surviving to adulthood, creating a need for programs to help them transition from pediatric to adult medical environments, said writing committee cochairs Dr. Craig Sable of Children’s National Medical Center in Washington and Dr. Elyse Foster of the University of California, San Francisco, and their colleagues.

An ideal transition program should "foster personal and medical independence and a greater sense of control over health, [health care] decisions, and psychosocial environment," the committee wrote (Circulation 2011 Feb. 28 [doi:10.1061/CIR.0b013e3182107c56]).

The statement recommends actively involving adolescents in the transition process, but timing the transition according to the patient’s emotional and developmental maturity. According to the AHA statement, the pediatric cardiologist should initiate a transition plan, and work with the adolescent to develop the plan. Clinicians should begin to direct health discussions toward the teen rather than the parent, and should encourage teens to talk privately (without a parent present) about their quality of life concerns, such as physical restrictions, school and peer issues, and other social relationships.

However, the AHA recommends that clinicians recognize parents’ fears and concerns, and solicit their opinions about what quality of life issues their teen might have, in addition to talking to the teen directly.

Ideally, an adolescent with CHD will have a medical home with a primary care provider who will maintain a confidential record of the patient’s medical information, the committee wrote. Once the patient is established with a cardiologist, that clinician should update the patient’s records with the primary care provider.

Surgical considerations for adolescents with CHD should include consulting an adult CHD (ACHD) expert during preoperative planning for elective surgery, choosing a clinical setting (pediatric or adult) based on the patient’s preferences and developmental status, and enlisting an anesthesiologist familiar with the physiology of adolescent CHD.

The statement lists additional issues to raise with adolescent CHD patients including genetic testing, sexuality and contraception, exercise, employment, and insurance. In all cases, discussion should be individualized based on the teen’s developmental status.

Many pediatric cardiologists continue to care for adolescents with CHD and developmental disabilities well into adulthood, but the AHA statement endorses the creation of individual transition plans to move these patients into successful adult CHD care, ideally as part of an overall transition plan from pediatric to adult health care.

The statement reviewed the following three key elements of the transition process from pediatric to adult CHD care that apply regardless of the specific transition model:

• Pretransition. The AHA recommends that children with CHD be introduced to the idea of managing their own health during childhood, so they can develop the necessary skills. One model for pretransition involves a nurse practitioner or physician assistant, who starts by counseling the adolescent about diet and exercise, contraception and pregnancy, high-risk behaviors, and other concerns.

• Transition. The AHA recommends that a transition curriculum educate teens about their medical history, diagnosis, and how their hearts are different. Teens in transition to adult care CHD should learn which symptoms are cause for concern, and understand different treatment options. Also, transitioning teens need to learn how to handle health insurance and how to schedule routine care visits and follow-up visits with specialists.

• Transfer. The AHA recommends transfer of care when adolescent CHD patients have shown an ability to meet their own health care needs independent of their families. The AHA does not recommend transfer from pediatric to adult care during medical crises or complications such as pregnancy, mental illness or noncompliance, to avoid additional psychological stress for the patient.

The recommendations were presented on behalf of the American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease.

According to the AHA statement, "It is hoped that in the near future, transition programs will become the standard of care, making it more likely that patients with complex chronic illness can achieve their full potential under appropriate medical surveillance and live meaningful and productive lives."

Many life changes take place during the late teens and early twenties, including evolving psychosocial, economic, geographic, and education or work factors, said Dr. Roberta G. Williams, a pediatric cardiologist at Children’s Hospital in Los Angeles. Preparing young people with chronic disease to transition to adult care must include an understanding of this framework in order to effectively transfer them to a system that requires self-determination.

Currently, this is done in a hit-or-miss fashion, she noted. Production of guidelines, developed by a consensus process, is an essential step toward changing practice patterns and planning for the institutional resources needed to facilitate successful transfer.

Surveys of pediatricians indicate that finding time to provide adolescents with appropriate guidance for their health care issues is a significant concern. Within pediatric cardiology programs, the guidance around lifestyle and health care is often provided by allied health professionals, but these resources are stretched thin, said Dr. Williams, who is also a member of the AHA writing committee that developed the statement..

Dr. Williams added that one of the most serious challenges facing doctors and patients is the lack of funding for case management that spans the period of transfer. Many of the problems faced by young people – particularly those with chronic disease – relate to financial and psychosocial issues. "Although most states provide funding to support advanced practice nursing and social services to pediatric programs, this support does not exist in the adult health care system except in the most extreme cases. Successful transfer requires not only a smooth takeoff, but also a secure landing. These resources must be developed for at least the 20-something population to ensure continued access to the appropriate health care providers," she said.

"My advice to clinicians is to start before the hormone surge. Preteens are often the most receptive," Dr. Williams suggested. It’s helpful to begin the conversation with the patient and family as soon as possible, and to repeat it often.

Dr. Sable had no financial conflicts to disclose. Cochair Dr. Elyse Foster of the University of California, San Francisco, has received research funding from Boston Scientific, Guidant, and Evalve Inc. Dr. Williams reported that she had no financial disclosures.

The transition of adolescents with congenital heart disease from pediatric to adult care should be targeted to the teen’s emotional and physical developmental status, according to a scientific statement from the American Heart Association.

The statement, "Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues," was published online Feb. 28 in Circulation.

More children with congenital heart disease are surviving to adulthood, creating a need for programs to help them transition from pediatric to adult medical environments, said writing committee cochairs Dr. Craig Sable of Children’s National Medical Center in Washington and Dr. Elyse Foster of the University of California, San Francisco, and their colleagues.

An ideal transition program should "foster personal and medical independence and a greater sense of control over health, [health care] decisions, and psychosocial environment," the committee wrote (Circulation 2011 Feb. 28 [doi:10.1061/CIR.0b013e3182107c56]).

The statement recommends actively involving adolescents in the transition process, but timing the transition according to the patient’s emotional and developmental maturity. According to the AHA statement, the pediatric cardiologist should initiate a transition plan, and work with the adolescent to develop the plan. Clinicians should begin to direct health discussions toward the teen rather than the parent, and should encourage teens to talk privately (without a parent present) about their quality of life concerns, such as physical restrictions, school and peer issues, and other social relationships.

However, the AHA recommends that clinicians recognize parents’ fears and concerns, and solicit their opinions about what quality of life issues their teen might have, in addition to talking to the teen directly.

Ideally, an adolescent with CHD will have a medical home with a primary care provider who will maintain a confidential record of the patient’s medical information, the committee wrote. Once the patient is established with a cardiologist, that clinician should update the patient’s records with the primary care provider.

Surgical considerations for adolescents with CHD should include consulting an adult CHD (ACHD) expert during preoperative planning for elective surgery, choosing a clinical setting (pediatric or adult) based on the patient’s preferences and developmental status, and enlisting an anesthesiologist familiar with the physiology of adolescent CHD.

The statement lists additional issues to raise with adolescent CHD patients including genetic testing, sexuality and contraception, exercise, employment, and insurance. In all cases, discussion should be individualized based on the teen’s developmental status.

Many pediatric cardiologists continue to care for adolescents with CHD and developmental disabilities well into adulthood, but the AHA statement endorses the creation of individual transition plans to move these patients into successful adult CHD care, ideally as part of an overall transition plan from pediatric to adult health care.

The statement reviewed the following three key elements of the transition process from pediatric to adult CHD care that apply regardless of the specific transition model:

• Pretransition. The AHA recommends that children with CHD be introduced to the idea of managing their own health during childhood, so they can develop the necessary skills. One model for pretransition involves a nurse practitioner or physician assistant, who starts by counseling the adolescent about diet and exercise, contraception and pregnancy, high-risk behaviors, and other concerns.

• Transition. The AHA recommends that a transition curriculum educate teens about their medical history, diagnosis, and how their hearts are different. Teens in transition to adult care CHD should learn which symptoms are cause for concern, and understand different treatment options. Also, transitioning teens need to learn how to handle health insurance and how to schedule routine care visits and follow-up visits with specialists.

• Transfer. The AHA recommends transfer of care when adolescent CHD patients have shown an ability to meet their own health care needs independent of their families. The AHA does not recommend transfer from pediatric to adult care during medical crises or complications such as pregnancy, mental illness or noncompliance, to avoid additional psychological stress for the patient.

The recommendations were presented on behalf of the American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease.

According to the AHA statement, "It is hoped that in the near future, transition programs will become the standard of care, making it more likely that patients with complex chronic illness can achieve their full potential under appropriate medical surveillance and live meaningful and productive lives."

Many life changes take place during the late teens and early twenties, including evolving psychosocial, economic, geographic, and education or work factors, said Dr. Roberta G. Williams, a pediatric cardiologist at Children’s Hospital in Los Angeles. Preparing young people with chronic disease to transition to adult care must include an understanding of this framework in order to effectively transfer them to a system that requires self-determination.

Currently, this is done in a hit-or-miss fashion, she noted. Production of guidelines, developed by a consensus process, is an essential step toward changing practice patterns and planning for the institutional resources needed to facilitate successful transfer.

Surveys of pediatricians indicate that finding time to provide adolescents with appropriate guidance for their health care issues is a significant concern. Within pediatric cardiology programs, the guidance around lifestyle and health care is often provided by allied health professionals, but these resources are stretched thin, said Dr. Williams, who is also a member of the AHA writing committee that developed the statement..

Dr. Williams added that one of the most serious challenges facing doctors and patients is the lack of funding for case management that spans the period of transfer. Many of the problems faced by young people – particularly those with chronic disease – relate to financial and psychosocial issues. "Although most states provide funding to support advanced practice nursing and social services to pediatric programs, this support does not exist in the adult health care system except in the most extreme cases. Successful transfer requires not only a smooth takeoff, but also a secure landing. These resources must be developed for at least the 20-something population to ensure continued access to the appropriate health care providers," she said.

"My advice to clinicians is to start before the hormone surge. Preteens are often the most receptive," Dr. Williams suggested. It’s helpful to begin the conversation with the patient and family as soon as possible, and to repeat it often.

Dr. Sable had no financial conflicts to disclose. Cochair Dr. Elyse Foster of the University of California, San Francisco, has received research funding from Boston Scientific, Guidant, and Evalve Inc. Dr. Williams reported that she had no financial disclosures.

The transition of adolescents with congenital heart disease from pediatric to adult care should be targeted to the teen’s emotional and physical developmental status, according to a scientific statement from the American Heart Association.

The statement, "Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues," was published online Feb. 28 in Circulation.

More children with congenital heart disease are surviving to adulthood, creating a need for programs to help them transition from pediatric to adult medical environments, said writing committee cochairs Dr. Craig Sable of Children’s National Medical Center in Washington and Dr. Elyse Foster of the University of California, San Francisco, and their colleagues.

An ideal transition program should "foster personal and medical independence and a greater sense of control over health, [health care] decisions, and psychosocial environment," the committee wrote (Circulation 2011 Feb. 28 [doi:10.1061/CIR.0b013e3182107c56]).

The statement recommends actively involving adolescents in the transition process, but timing the transition according to the patient’s emotional and developmental maturity. According to the AHA statement, the pediatric cardiologist should initiate a transition plan, and work with the adolescent to develop the plan. Clinicians should begin to direct health discussions toward the teen rather than the parent, and should encourage teens to talk privately (without a parent present) about their quality of life concerns, such as physical restrictions, school and peer issues, and other social relationships.

However, the AHA recommends that clinicians recognize parents’ fears and concerns, and solicit their opinions about what quality of life issues their teen might have, in addition to talking to the teen directly.

Ideally, an adolescent with CHD will have a medical home with a primary care provider who will maintain a confidential record of the patient’s medical information, the committee wrote. Once the patient is established with a cardiologist, that clinician should update the patient’s records with the primary care provider.

Surgical considerations for adolescents with CHD should include consulting an adult CHD (ACHD) expert during preoperative planning for elective surgery, choosing a clinical setting (pediatric or adult) based on the patient’s preferences and developmental status, and enlisting an anesthesiologist familiar with the physiology of adolescent CHD.

The statement lists additional issues to raise with adolescent CHD patients including genetic testing, sexuality and contraception, exercise, employment, and insurance. In all cases, discussion should be individualized based on the teen’s developmental status.

Many pediatric cardiologists continue to care for adolescents with CHD and developmental disabilities well into adulthood, but the AHA statement endorses the creation of individual transition plans to move these patients into successful adult CHD care, ideally as part of an overall transition plan from pediatric to adult health care.

The statement reviewed the following three key elements of the transition process from pediatric to adult CHD care that apply regardless of the specific transition model:

• Pretransition. The AHA recommends that children with CHD be introduced to the idea of managing their own health during childhood, so they can develop the necessary skills. One model for pretransition involves a nurse practitioner or physician assistant, who starts by counseling the adolescent about diet and exercise, contraception and pregnancy, high-risk behaviors, and other concerns.

• Transition. The AHA recommends that a transition curriculum educate teens about their medical history, diagnosis, and how their hearts are different. Teens in transition to adult care CHD should learn which symptoms are cause for concern, and understand different treatment options. Also, transitioning teens need to learn how to handle health insurance and how to schedule routine care visits and follow-up visits with specialists.

• Transfer. The AHA recommends transfer of care when adolescent CHD patients have shown an ability to meet their own health care needs independent of their families. The AHA does not recommend transfer from pediatric to adult care during medical crises or complications such as pregnancy, mental illness or noncompliance, to avoid additional psychological stress for the patient.

The recommendations were presented on behalf of the American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease.

According to the AHA statement, "It is hoped that in the near future, transition programs will become the standard of care, making it more likely that patients with complex chronic illness can achieve their full potential under appropriate medical surveillance and live meaningful and productive lives."

Many life changes take place during the late teens and early twenties, including evolving psychosocial, economic, geographic, and education or work factors, said Dr. Roberta G. Williams, a pediatric cardiologist at Children’s Hospital in Los Angeles. Preparing young people with chronic disease to transition to adult care must include an understanding of this framework in order to effectively transfer them to a system that requires self-determination.

Currently, this is done in a hit-or-miss fashion, she noted. Production of guidelines, developed by a consensus process, is an essential step toward changing practice patterns and planning for the institutional resources needed to facilitate successful transfer.

Surveys of pediatricians indicate that finding time to provide adolescents with appropriate guidance for their health care issues is a significant concern. Within pediatric cardiology programs, the guidance around lifestyle and health care is often provided by allied health professionals, but these resources are stretched thin, said Dr. Williams, who is also a member of the AHA writing committee that developed the statement..

Dr. Williams added that one of the most serious challenges facing doctors and patients is the lack of funding for case management that spans the period of transfer. Many of the problems faced by young people – particularly those with chronic disease – relate to financial and psychosocial issues. "Although most states provide funding to support advanced practice nursing and social services to pediatric programs, this support does not exist in the adult health care system except in the most extreme cases. Successful transfer requires not only a smooth takeoff, but also a secure landing. These resources must be developed for at least the 20-something population to ensure continued access to the appropriate health care providers," she said.

"My advice to clinicians is to start before the hormone surge. Preteens are often the most receptive," Dr. Williams suggested. It’s helpful to begin the conversation with the patient and family as soon as possible, and to repeat it often.

Dr. Sable had no financial conflicts to disclose. Cochair Dr. Elyse Foster of the University of California, San Francisco, has received research funding from Boston Scientific, Guidant, and Evalve Inc. Dr. Williams reported that she had no financial disclosures.

The transition of adolescents with congenital heart disease from pediatric to adult care should be targeted to the teen’s emotional and physical developmental status, according to a scientific statement from the American Heart Association.

The statement, "Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues," was published online Feb. 28 in Circulation.

More children with congenital heart disease are surviving to adulthood, creating a need for programs to help them transition from pediatric to adult medical environments, said writing committee cochairs Dr. Craig Sable of Children’s National Medical Center in Washington and Dr. Elyse Foster of the University of California, San Francisco, and their colleagues.

An ideal transition program should "foster personal and medical independence and a greater sense of control over health, [health care] decisions, and psychosocial environment," the committee wrote (Circulation 2011 Feb. 28 [doi:10.1061/CIR.0b013e3182107c56]).

The statement recommends actively involving adolescents in the transition process, but timing the transition according to the patient’s emotional and developmental maturity. According to the AHA statement, the pediatric cardiologist should initiate a transition plan, and work with the adolescent to develop the plan. Clinicians should begin to direct health discussions toward the teen rather than the parent, and should encourage teens to talk privately (without a parent present) about their quality of life concerns, such as physical restrictions, school and peer issues, and other social relationships.

However, the AHA recommends that clinicians recognize parents’ fears and concerns, and solicit their opinions about what quality of life issues their teen might have, in addition to talking to the teen directly.

Ideally, an adolescent with CHD will have a medical home with a primary care provider who will maintain a confidential record of the patient’s medical information, the committee wrote. Once the patient is established with a cardiologist, that clinician should update the patient’s records with the primary care provider.

Surgical considerations for adolescents with CHD should include consulting an adult CHD (ACHD) expert during preoperative planning for elective surgery, choosing a clinical setting (pediatric or adult) based on the patient’s preferences and developmental status, and enlisting an anesthesiologist familiar with the physiology of adolescent CHD.

The statement lists additional issues to raise with adolescent CHD patients including genetic testing, sexuality and contraception, exercise, employment, and insurance. In all cases, discussion should be individualized based on the teen’s developmental status.

Many pediatric cardiologists continue to care for adolescents with CHD and developmental disabilities well into adulthood, but the AHA statement endorses the creation of individual transition plans to move these patients into successful adult CHD care, ideally as part of an overall transition plan from pediatric to adult health care.

The statement reviewed the following three key elements of the transition process from pediatric to adult CHD care that apply regardless of the specific transition model:

• Pretransition. The AHA recommends that children with CHD be introduced to the idea of managing their own health during childhood, so they can develop the necessary skills. One model for pretransition involves a nurse practitioner or physician assistant, who starts by counseling the adolescent about diet and exercise, contraception and pregnancy, high-risk behaviors, and other concerns.

• Transition. The AHA recommends that a transition curriculum educate teens about their medical history, diagnosis, and how their hearts are different. Teens in transition to adult care CHD should learn which symptoms are cause for concern, and understand different treatment options. Also, transitioning teens need to learn how to handle health insurance and how to schedule routine care visits and follow-up visits with specialists.

• Transfer. The AHA recommends transfer of care when adolescent CHD patients have shown an ability to meet their own health care needs independent of their families. The AHA does not recommend transfer from pediatric to adult care during medical crises or complications such as pregnancy, mental illness or noncompliance, to avoid additional psychological stress for the patient.

The recommendations were presented on behalf of the American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease.

According to the AHA statement, "It is hoped that in the near future, transition programs will become the standard of care, making it more likely that patients with complex chronic illness can achieve their full potential under appropriate medical surveillance and live meaningful and productive lives."

Many life changes take place during the late teens and early twenties, including evolving psychosocial, economic, geographic, and education or work factors, said Dr. Roberta G. Williams, a pediatric cardiologist at Children’s Hospital in Los Angeles. Preparing young people with chronic disease to transition to adult care must include an understanding of this framework in order to effectively transfer them to a system that requires self-determination.

Currently, this is done in a hit-or-miss fashion, she noted. Production of guidelines, developed by a consensus process, is an essential step toward changing practice patterns and planning for the institutional resources needed to facilitate successful transfer.

Surveys of pediatricians indicate that finding time to provide adolescents with appropriate guidance for their health care issues is a significant concern. Within pediatric cardiology programs, the guidance around lifestyle and health care is often provided by allied health professionals, but these resources are stretched thin, said Dr. Williams, who is also a member of the AHA writing committee that developed the statement..

Dr. Williams added that one of the most serious challenges facing doctors and patients is the lack of funding for case management that spans the period of transfer. Many of the problems faced by young people – particularly those with chronic disease – relate to financial and psychosocial issues. "Although most states provide funding to support advanced practice nursing and social services to pediatric programs, this support does not exist in the adult health care system except in the most extreme cases. Successful transfer requires not only a smooth takeoff, but also a secure landing. These resources must be developed for at least the 20-something population to ensure continued access to the appropriate health care providers," she said.

"My advice to clinicians is to start before the hormone surge. Preteens are often the most receptive," Dr. Williams suggested. It’s helpful to begin the conversation with the patient and family as soon as possible, and to repeat it often.

Dr. Sable had no financial conflicts to disclose. Cochair Dr. Elyse Foster of the University of California, San Francisco, has received research funding from Boston Scientific, Guidant, and Evalve Inc. Dr. Williams reported that she had no financial disclosures.

The transition of adolescents with congenital heart disease from pediatric to adult care should be targeted to the teen’s emotional and physical developmental status, according to a scientific statement from the American Heart Association.

The statement, "Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues," was published online Feb. 28 in Circulation.

More children with congenital heart disease are surviving to adulthood, creating a need for programs to help them transition from pediatric to adult medical environments, said writing committee cochairs Dr. Craig Sable of Children’s National Medical Center in Washington and Dr. Elyse Foster of the University of California, San Francisco, and their colleagues.

An ideal transition program should "foster personal and medical independence and a greater sense of control over health, [health care] decisions, and psychosocial environment," the committee wrote (Circulation 2011 Feb. 28 [doi:10.1061/CIR.0b013e3182107c56]).

The statement recommends actively involving adolescents in the transition process, but timing the transition according to the patient’s emotional and developmental maturity. According to the AHA statement, the pediatric cardiologist should initiate a transition plan, and work with the adolescent to develop the plan. Clinicians should begin to direct health discussions toward the teen rather than the parent, and should encourage teens to talk privately (without a parent present) about their quality of life concerns, such as physical restrictions, school and peer issues, and other social relationships.

However, the AHA recommends that clinicians recognize parents’ fears and concerns, and solicit their opinions about what quality of life issues their teen might have, in addition to talking to the teen directly.

Ideally, an adolescent with CHD will have a medical home with a primary care provider who will maintain a confidential record of the patient’s medical information, the committee wrote. Once the patient is established with a cardiologist, that clinician should update the patient’s records with the primary care provider.

Surgical considerations for adolescents with CHD should include consulting an adult CHD (ACHD) expert during preoperative planning for elective surgery, choosing a clinical setting (pediatric or adult) based on the patient’s preferences and developmental status, and enlisting an anesthesiologist familiar with the physiology of adolescent CHD.

The statement lists additional issues to raise with adolescent CHD patients including genetic testing, sexuality and contraception, exercise, employment, and insurance. In all cases, discussion should be individualized based on the teen’s developmental status.

Many pediatric cardiologists continue to care for adolescents with CHD and developmental disabilities well into adulthood, but the AHA statement endorses the creation of individual transition plans to move these patients into successful adult CHD care, ideally as part of an overall transition plan from pediatric to adult health care.

The statement reviewed the following three key elements of the transition process from pediatric to adult CHD care that apply regardless of the specific transition model:

• Pretransition. The AHA recommends that children with CHD be introduced to the idea of managing their own health during childhood, so they can develop the necessary skills. One model for pretransition involves a nurse practitioner or physician assistant, who starts by counseling the adolescent about diet and exercise, contraception and pregnancy, high-risk behaviors, and other concerns.

• Transition. The AHA recommends that a transition curriculum educate teens about their medical history, diagnosis, and how their hearts are different. Teens in transition to adult care CHD should learn which symptoms are cause for concern, and understand different treatment options. Also, transitioning teens need to learn how to handle health insurance and how to schedule routine care visits and follow-up visits with specialists.

• Transfer. The AHA recommends transfer of care when adolescent CHD patients have shown an ability to meet their own health care needs independent of their families. The AHA does not recommend transfer from pediatric to adult care during medical crises or complications such as pregnancy, mental illness or noncompliance, to avoid additional psychological stress for the patient.

The recommendations were presented on behalf of the American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease.

According to the AHA statement, "It is hoped that in the near future, transition programs will become the standard of care, making it more likely that patients with complex chronic illness can achieve their full potential under appropriate medical surveillance and live meaningful and productive lives."

Many life changes take place during the late teens and early twenties, including evolving psychosocial, economic, geographic, and education or work factors, said Dr. Roberta G. Williams, a pediatric cardiologist at Children’s Hospital in Los Angeles. Preparing young people with chronic disease to transition to adult care must include an understanding of this framework in order to effectively transfer them to a system that requires self-determination.

Currently, this is done in a hit-or-miss fashion, she noted. Production of guidelines, developed by a consensus process, is an essential step toward changing practice patterns and planning for the institutional resources needed to facilitate successful transfer.

Surveys of pediatricians indicate that finding time to provide adolescents with appropriate guidance for their health care issues is a significant concern. Within pediatric cardiology programs, the guidance around lifestyle and health care is often provided by allied health professionals, but these resources are stretched thin, said Dr. Williams, who is also a member of the AHA writing committee that developed the statement..

Dr. Williams added that one of the most serious challenges facing doctors and patients is the lack of funding for case management that spans the period of transfer. Many of the problems faced by young people – particularly those with chronic disease – relate to financial and psychosocial issues. "Although most states provide funding to support advanced practice nursing and social services to pediatric programs, this support does not exist in the adult health care system except in the most extreme cases. Successful transfer requires not only a smooth takeoff, but also a secure landing. These resources must be developed for at least the 20-something population to ensure continued access to the appropriate health care providers," she said.

"My advice to clinicians is to start before the hormone surge. Preteens are often the most receptive," Dr. Williams suggested. It’s helpful to begin the conversation with the patient and family as soon as possible, and to repeat it often.

Dr. Sable had no financial conflicts to disclose. Cochair Dr. Elyse Foster of the University of California, San Francisco, has received research funding from Boston Scientific, Guidant, and Evalve Inc. Dr. Williams reported that she had no financial disclosures.

The transition of adolescents with congenital heart disease from pediatric to adult care should be targeted to the teen’s emotional and physical developmental status, according to a scientific statement from the American Heart Association.

The statement, "Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues," was published online Feb. 28 in Circulation.

More children with congenital heart disease are surviving to adulthood, creating a need for programs to help them transition from pediatric to adult medical environments, said writing committee cochairs Dr. Craig Sable of Children’s National Medical Center in Washington and Dr. Elyse Foster of the University of California, San Francisco, and their colleagues.

An ideal transition program should "foster personal and medical independence and a greater sense of control over health, [health care] decisions, and psychosocial environment," the committee wrote (Circulation 2011 Feb. 28 [doi:10.1061/CIR.0b013e3182107c56]).

The statement recommends actively involving adolescents in the transition process, but timing the transition according to the patient’s emotional and developmental maturity. According to the AHA statement, the pediatric cardiologist should initiate a transition plan, and work with the adolescent to develop the plan. Clinicians should begin to direct health discussions toward the teen rather than the parent, and should encourage teens to talk privately (without a parent present) about their quality of life concerns, such as physical restrictions, school and peer issues, and other social relationships.

However, the AHA recommends that clinicians recognize parents’ fears and concerns, and solicit their opinions about what quality of life issues their teen might have, in addition to talking to the teen directly.

Ideally, an adolescent with CHD will have a medical home with a primary care provider who will maintain a confidential record of the patient’s medical information, the committee wrote. Once the patient is established with a cardiologist, that clinician should update the patient’s records with the primary care provider.

Surgical considerations for adolescents with CHD should include consulting an adult CHD (ACHD) expert during preoperative planning for elective surgery, choosing a clinical setting (pediatric or adult) based on the patient’s preferences and developmental status, and enlisting an anesthesiologist familiar with the physiology of adolescent CHD.

The statement lists additional issues to raise with adolescent CHD patients including genetic testing, sexuality and contraception, exercise, employment, and insurance. In all cases, discussion should be individualized based on the teen’s developmental status.

Many pediatric cardiologists continue to care for adolescents with CHD and developmental disabilities well into adulthood, but the AHA statement endorses the creation of individual transition plans to move these patients into successful adult CHD care, ideally as part of an overall transition plan from pediatric to adult health care.

The statement reviewed the following three key elements of the transition process from pediatric to adult CHD care that apply regardless of the specific transition model:

• Pretransition. The AHA recommends that children with CHD be introduced to the idea of managing their own health during childhood, so they can develop the necessary skills. One model for pretransition involves a nurse practitioner or physician assistant, who starts by counseling the adolescent about diet and exercise, contraception and pregnancy, high-risk behaviors, and other concerns.

• Transition. The AHA recommends that a transition curriculum educate teens about their medical history, diagnosis, and how their hearts are different. Teens in transition to adult care CHD should learn which symptoms are cause for concern, and understand different treatment options. Also, transitioning teens need to learn how to handle health insurance and how to schedule routine care visits and follow-up visits with specialists.

• Transfer. The AHA recommends transfer of care when adolescent CHD patients have shown an ability to meet their own health care needs independent of their families. The AHA does not recommend transfer from pediatric to adult care during medical crises or complications such as pregnancy, mental illness or noncompliance, to avoid additional psychological stress for the patient.

The recommendations were presented on behalf of the American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease.

According to the AHA statement, "It is hoped that in the near future, transition programs will become the standard of care, making it more likely that patients with complex chronic illness can achieve their full potential under appropriate medical surveillance and live meaningful and productive lives."

Many life changes take place during the late teens and early twenties, including evolving psychosocial, economic, geographic, and education or work factors, said Dr. Roberta G. Williams, a pediatric cardiologist at Children’s Hospital in Los Angeles. Preparing young people with chronic disease to transition to adult care must include an understanding of this framework in order to effectively transfer them to a system that requires self-determination.

Currently, this is done in a hit-or-miss fashion, she noted. Production of guidelines, developed by a consensus process, is an essential step toward changing practice patterns and planning for the institutional resources needed to facilitate successful transfer.

Surveys of pediatricians indicate that finding time to provide adolescents with appropriate guidance for their health care issues is a significant concern. Within pediatric cardiology programs, the guidance around lifestyle and health care is often provided by allied health professionals, but these resources are stretched thin, said Dr. Williams, who is also a member of the AHA writing committee that developed the statement..

Dr. Williams added that one of the most serious challenges facing doctors and patients is the lack of funding for case management that spans the period of transfer. Many of the problems faced by young people – particularly those with chronic disease – relate to financial and psychosocial issues. "Although most states provide funding to support advanced practice nursing and social services to pediatric programs, this support does not exist in the adult health care system except in the most extreme cases. Successful transfer requires not only a smooth takeoff, but also a secure landing. These resources must be developed for at least the 20-something population to ensure continued access to the appropriate health care providers," she said.

"My advice to clinicians is to start before the hormone surge. Preteens are often the most receptive," Dr. Williams suggested. It’s helpful to begin the conversation with the patient and family as soon as possible, and to repeat it often.

Dr. Sable had no financial conflicts to disclose. Cochair Dr. Elyse Foster of the University of California, San Francisco, has received research funding from Boston Scientific, Guidant, and Evalve Inc. Dr. Williams reported that she had no financial disclosures.

The transition of adolescents with congenital heart disease from pediatric to adult care should be targeted to the teen’s emotional and physical developmental status, according to a scientific statement from the American Heart Association.

The statement, "Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues," was published online Feb. 28 in Circulation.

More children with congenital heart disease are surviving to adulthood, creating a need for programs to help them transition from pediatric to adult medical environments, said writing committee cochairs Dr. Craig Sable of Children’s National Medical Center in Washington and Dr. Elyse Foster of the University of California, San Francisco, and their colleagues.

An ideal transition program should "foster personal and medical independence and a greater sense of control over health, [health care] decisions, and psychosocial environment," the committee wrote (Circulation 2011 Feb. 28 [doi:10.1061/CIR.0b013e3182107c56]).

The statement recommends actively involving adolescents in the transition process, but timing the transition according to the patient’s emotional and developmental maturity. According to the AHA statement, the pediatric cardiologist should initiate a transition plan, and work with the adolescent to develop the plan. Clinicians should begin to direct health discussions toward the teen rather than the parent, and should encourage teens to talk privately (without a parent present) about their quality of life concerns, such as physical restrictions, school and peer issues, and other social relationships.

However, the AHA recommends that clinicians recognize parents’ fears and concerns, and solicit their opinions about what quality of life issues their teen might have, in addition to talking to the teen directly.

Ideally, an adolescent with CHD will have a medical home with a primary care provider who will maintain a confidential record of the patient’s medical information, the committee wrote. Once the patient is established with a cardiologist, that clinician should update the patient’s records with the primary care provider.

Surgical considerations for adolescents with CHD should include consulting an adult CHD (ACHD) expert during preoperative planning for elective surgery, choosing a clinical setting (pediatric or adult) based on the patient’s preferences and developmental status, and enlisting an anesthesiologist familiar with the physiology of adolescent CHD.

The statement lists additional issues to raise with adolescent CHD patients including genetic testing, sexuality and contraception, exercise, employment, and insurance. In all cases, discussion should be individualized based on the teen’s developmental status.

Many pediatric cardiologists continue to care for adolescents with CHD and developmental disabilities well into adulthood, but the AHA statement endorses the creation of individual transition plans to move these patients into successful adult CHD care, ideally as part of an overall transition plan from pediatric to adult health care.

The statement reviewed the following three key elements of the transition process from pediatric to adult CHD care that apply regardless of the specific transition model:

• Pretransition. The AHA recommends that children with CHD be introduced to the idea of managing their own health during childhood, so they can develop the necessary skills. One model for pretransition involves a nurse practitioner or physician assistant, who starts by counseling the adolescent about diet and exercise, contraception and pregnancy, high-risk behaviors, and other concerns.

• Transition. The AHA recommends that a transition curriculum educate teens about their medical history, diagnosis, and how their hearts are different. Teens in transition to adult care CHD should learn which symptoms are cause for concern, and understand different treatment options. Also, transitioning teens need to learn how to handle health insurance and how to schedule routine care visits and follow-up visits with specialists.

• Transfer. The AHA recommends transfer of care when adolescent CHD patients have shown an ability to meet their own health care needs independent of their families. The AHA does not recommend transfer from pediatric to adult care during medical crises or complications such as pregnancy, mental illness or noncompliance, to avoid additional psychological stress for the patient.

The recommendations were presented on behalf of the American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease.

According to the AHA statement, "It is hoped that in the near future, transition programs will become the standard of care, making it more likely that patients with complex chronic illness can achieve their full potential under appropriate medical surveillance and live meaningful and productive lives."

Many life changes take place during the late teens and early twenties, including evolving psychosocial, economic, geographic, and education or work factors, said Dr. Roberta G. Williams, a pediatric cardiologist at Children’s Hospital in Los Angeles. Preparing young people with chronic disease to transition to adult care must include an understanding of this framework in order to effectively transfer them to a system that requires self-determination.

Currently, this is done in a hit-or-miss fashion, she noted. Production of guidelines, developed by a consensus process, is an essential step toward changing practice patterns and planning for the institutional resources needed to facilitate successful transfer.

Surveys of pediatricians indicate that finding time to provide adolescents with appropriate guidance for their health care issues is a significant concern. Within pediatric cardiology programs, the guidance around lifestyle and health care is often provided by allied health professionals, but these resources are stretched thin, said Dr. Williams, who is also a member of the AHA writing committee that developed the statement..

Dr. Williams added that one of the most serious challenges facing doctors and patients is the lack of funding for case management that spans the period of transfer. Many of the problems faced by young people – particularly those with chronic disease – relate to financial and psychosocial issues. "Although most states provide funding to support advanced practice nursing and social services to pediatric programs, this support does not exist in the adult health care system except in the most extreme cases. Successful transfer requires not only a smooth takeoff, but also a secure landing. These resources must be developed for at least the 20-something population to ensure continued access to the appropriate health care providers," she said.

"My advice to clinicians is to start before the hormone surge. Preteens are often the most receptive," Dr. Williams suggested. It’s helpful to begin the conversation with the patient and family as soon as possible, and to repeat it often.

Dr. Sable had no financial conflicts to disclose. Cochair Dr. Elyse Foster of the University of California, San Francisco, has received research funding from Boston Scientific, Guidant, and Evalve Inc. Dr. Williams reported that she had no financial disclosures.

The transition of adolescents with congenital heart disease from pediatric to adult care should be targeted to the teen’s emotional and physical developmental status, according to a scientific statement from the American Heart Association.

The statement, "Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues," was published online Feb. 28 in Circulation.

More children with congenital heart disease are surviving to adulthood, creating a need for programs to help them transition from pediatric to adult medical environments, said writing committee cochairs Dr. Craig Sable of Children’s National Medical Center in Washington and Dr. Elyse Foster of the University of California, San Francisco, and their colleagues.

An ideal transition program should "foster personal and medical independence and a greater sense of control over health, [health care] decisions, and psychosocial environment," the committee wrote (Circulation 2011 Feb. 28 [doi:10.1061/CIR.0b013e3182107c56]).

The statement recommends actively involving adolescents in the transition process, but timing the transition according to the patient’s emotional and developmental maturity. According to the AHA statement, the pediatric cardiologist should initiate a transition plan, and work with the adolescent to develop the plan. Clinicians should begin to direct health discussions toward the teen rather than the parent, and should encourage teens to talk privately (without a parent present) about their quality of life concerns, such as physical restrictions, school and peer issues, and other social relationships.

However, the AHA recommends that clinicians recognize parents’ fears and concerns, and solicit their opinions about what quality of life issues their teen might have, in addition to talking to the teen directly.

Ideally, an adolescent with CHD will have a medical home with a primary care provider who will maintain a confidential record of the patient’s medical information, the committee wrote. Once the patient is established with a cardiologist, that clinician should update the patient’s records with the primary care provider.

Surgical considerations for adolescents with CHD should include consulting an adult CHD (ACHD) expert during preoperative planning for elective surgery, choosing a clinical setting (pediatric or adult) based on the patient’s preferences and developmental status, and enlisting an anesthesiologist familiar with the physiology of adolescent CHD.

The statement lists additional issues to raise with adolescent CHD patients including genetic testing, sexuality and contraception, exercise, employment, and insurance. In all cases, discussion should be individualized based on the teen’s developmental status.

Many pediatric cardiologists continue to care for adolescents with CHD and developmental disabilities well into adulthood, but the AHA statement endorses the creation of individual transition plans to move these patients into successful adult CHD care, ideally as part of an overall transition plan from pediatric to adult health care.

The statement reviewed the following three key elements of the transition process from pediatric to adult CHD care that apply regardless of the specific transition model:

• Pretransition. The AHA recommends that children with CHD be introduced to the idea of managing their own health during childhood, so they can develop the necessary skills. One model for pretransition involves a nurse practitioner or physician assistant, who starts by counseling the adolescent about diet and exercise, contraception and pregnancy, high-risk behaviors, and other concerns.

• Transition. The AHA recommends that a transition curriculum educate teens about their medical history, diagnosis, and how their hearts are different. Teens in transition to adult care CHD should learn which symptoms are cause for concern, and understand different treatment options. Also, transitioning teens need to learn how to handle health insurance and how to schedule routine care visits and follow-up visits with specialists.

• Transfer. The AHA recommends transfer of care when adolescent CHD patients have shown an ability to meet their own health care needs independent of their families. The AHA does not recommend transfer from pediatric to adult care during medical crises or complications such as pregnancy, mental illness or noncompliance, to avoid additional psychological stress for the patient.

The recommendations were presented on behalf of the American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease.

According to the AHA statement, "It is hoped that in the near future, transition programs will become the standard of care, making it more likely that patients with complex chronic illness can achieve their full potential under appropriate medical surveillance and live meaningful and productive lives."

Many life changes take place during the late teens and early twenties, including evolving psychosocial, economic, geographic, and education or work factors, said Dr. Roberta G. Williams, a pediatric cardiologist at Children’s Hospital in Los Angeles. Preparing young people with chronic disease to transition to adult care must include an understanding of this framework in order to effectively transfer them to a system that requires self-determination.

Currently, this is done in a hit-or-miss fashion, she noted. Production of guidelines, developed by a consensus process, is an essential step toward changing practice patterns and planning for the institutional resources needed to facilitate successful transfer.

Surveys of pediatricians indicate that finding time to provide adolescents with appropriate guidance for their health care issues is a significant concern. Within pediatric cardiology programs, the guidance around lifestyle and health care is often provided by allied health professionals, but these resources are stretched thin, said Dr. Williams, who is also a member of the AHA writing committee that developed the statement..

Dr. Williams added that one of the most serious challenges facing doctors and patients is the lack of funding for case management that spans the period of transfer. Many of the problems faced by young people – particularly those with chronic disease – relate to financial and psychosocial issues. "Although most states provide funding to support advanced practice nursing and social services to pediatric programs, this support does not exist in the adult health care system except in the most extreme cases. Successful transfer requires not only a smooth takeoff, but also a secure landing. These resources must be developed for at least the 20-something population to ensure continued access to the appropriate health care providers," she said.

"My advice to clinicians is to start before the hormone surge. Preteens are often the most receptive," Dr. Williams suggested. It’s helpful to begin the conversation with the patient and family as soon as possible, and to repeat it often.

Dr. Sable had no financial conflicts to disclose. Cochair Dr. Elyse Foster of the University of California, San Francisco, has received research funding from Boston Scientific, Guidant, and Evalve Inc. Dr. Williams reported that she had no financial disclosures.

The transition of adolescents with congenital heart disease from pediatric to adult care should be targeted to the teen’s emotional and physical developmental status, according to a scientific statement from the American Heart Association.

The statement, "Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues," was published online Feb. 28 in Circulation.

More children with congenital heart disease are surviving to adulthood, creating a need for programs to help them transition from pediatric to adult medical environments, said writing committee cochairs Dr. Craig Sable of Children’s National Medical Center in Washington and Dr. Elyse Foster of the University of California, San Francisco, and their colleagues.

An ideal transition program should "foster personal and medical independence and a greater sense of control over health, [health care] decisions, and psychosocial environment," the committee wrote (Circulation 2011 Feb. 28 [doi:10.1061/CIR.0b013e3182107c56]).

The statement recommends actively involving adolescents in the transition process, but timing the transition according to the patient’s emotional and developmental maturity. According to the AHA statement, the pediatric cardiologist should initiate a transition plan, and work with the adolescent to develop the plan. Clinicians should begin to direct health discussions toward the teen rather than the parent, and should encourage teens to talk privately (without a parent present) about their quality of life concerns, such as physical restrictions, school and peer issues, and other social relationships.

However, the AHA recommends that clinicians recognize parents’ fears and concerns, and solicit their opinions about what quality of life issues their teen might have, in addition to talking to the teen directly.

Ideally, an adolescent with CHD will have a medical home with a primary care provider who will maintain a confidential record of the patient’s medical information, the committee wrote. Once the patient is established with a cardiologist, that clinician should update the patient’s records with the primary care provider.

Surgical considerations for adolescents with CHD should include consulting an adult CHD (ACHD) expert during preoperative planning for elective surgery, choosing a clinical setting (pediatric or adult) based on the patient’s preferences and developmental status, and enlisting an anesthesiologist familiar with the physiology of adolescent CHD.

The statement lists additional issues to raise with adolescent CHD patients including genetic testing, sexuality and contraception, exercise, employment, and insurance. In all cases, discussion should be individualized based on the teen’s developmental status.

Many pediatric cardiologists continue to care for adolescents with CHD and developmental disabilities well into adulthood, but the AHA statement endorses the creation of individual transition plans to move these patients into successful adult CHD care, ideally as part of an overall transition plan from pediatric to adult health care.

The statement reviewed the following three key elements of the transition process from pediatric to adult CHD care that apply regardless of the specific transition model:

• Pretransition. The AHA recommends that children with CHD be introduced to the idea of managing their own health during childhood, so they can develop the necessary skills. One model for pretransition involves a nurse practitioner or physician assistant, who starts by counseling the adolescent about diet and exercise, contraception and pregnancy, high-risk behaviors, and other concerns.

• Transition. The AHA recommends that a transition curriculum educate teens about their medical history, diagnosis, and how their hearts are different. Teens in transition to adult care CHD should learn which symptoms are cause for concern, and understand different treatment options. Also, transitioning teens need to learn how to handle health insurance and how to schedule routine care visits and follow-up visits with specialists.

• Transfer. The AHA recommends transfer of care when adolescent CHD patients have shown an ability to meet their own health care needs independent of their families. The AHA does not recommend transfer from pediatric to adult care during medical crises or complications such as pregnancy, mental illness or noncompliance, to avoid additional psychological stress for the patient.

The recommendations were presented on behalf of the American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease.

According to the AHA statement, "It is hoped that in the near future, transition programs will become the standard of care, making it more likely that patients with complex chronic illness can achieve their full potential under appropriate medical surveillance and live meaningful and productive lives."

Many life changes take place during the late teens and early twenties, including evolving psychosocial, economic, geographic, and education or work factors, said Dr. Roberta G. Williams, a pediatric cardiologist at Children’s Hospital in Los Angeles. Preparing young people with chronic disease to transition to adult care must include an understanding of this framework in order to effectively transfer them to a system that requires self-determination.

Currently, this is done in a hit-or-miss fashion, she noted. Production of guidelines, developed by a consensus process, is an essential step toward changing practice patterns and planning for the institutional resources needed to facilitate successful transfer.

Surveys of pediatricians indicate that finding time to provide adolescents with appropriate guidance for their health care issues is a significant concern. Within pediatric cardiology programs, the guidance around lifestyle and health care is often provided by allied health professionals, but these resources are stretched thin, said Dr. Williams, who is also a member of the AHA writing committee that developed the statement..

Dr. Williams added that one of the most serious challenges facing doctors and patients is the lack of funding for case management that spans the period of transfer. Many of the problems faced by young people – particularly those with chronic disease – relate to financial and psychosocial issues. "Although most states provide funding to support advanced practice nursing and social services to pediatric programs, this support does not exist in the adult health care system except in the most extreme cases. Successful transfer requires not only a smooth takeoff, but also a secure landing. These resources must be developed for at least the 20-something population to ensure continued access to the appropriate health care providers," she said.

"My advice to clinicians is to start before the hormone surge. Preteens are often the most receptive," Dr. Williams suggested. It’s helpful to begin the conversation with the patient and family as soon as possible, and to repeat it often.

Dr. Sable had no financial conflicts to disclose. Cochair Dr. Elyse Foster of the University of California, San Francisco, has received research funding from Boston Scientific, Guidant, and Evalve Inc. Dr. Williams reported that she had no financial disclosures.