It is estimated that 18 million U.S. adolescents, aged 18 to 21 years, will transition from pediatric to adult care, according to the most recent statistics from the 2013 Current Population Survey of the U.S. Census Bureau.
Yet, results of a 2009-2010 National Survey of Children with Special Health Care Needs indicate that while the majority of health care providers encourage their youth with special health care needs to assume responsibility for their own health care, most are not receiving the needed preparation for the transition of care.
“It is difficult for patients with developmental disabilities to advocate for themselves,” Eric Levey, MD, FAAP, of the Kennedy Krieger Institute in Baltimore, said during an interview with Infectious Diseases in Children. “One of the biggest pushes in medicine right now is the medical home. In the ideal world, if everyone had a medical home where their primary care provider helped navigate care, then we wouldn’t have to worry as much about transition and how these patients with complicated problems are going to be taken care of — but, we are not there yet.”
Infectious Diseases in Children spoke with several experts about the obstacles and challenges of transitioning from pediatric to adult care among patients with developmental disabilities, as well as the changes being made to bridge the gap in transitional care for these patients.
Types of developmental disabilities
The CDC defines developmental disabilities as a group of conditions due to impairment in physical, learning, language or behavior areas. These disabilities most often last throughout a person’s lifetime, impacting day-to-day functioning.
All racial, ethnic and socioeconomic groups are affected, according to the CDC. The most recent U.S estimates suggest one in six children aged 3 to 17 years has one or more developmental disabilities. These may include autism spectrum disorders, cerebral palsy, ADHD, hearing loss or vision impairment.
Oscar M. Taube, MD, of Sinai Hospital of Baltimore, said that pediatricians need to inform families early on that there is an office policy on transition.
Photo courtesy of Taube OM
For the same reasons every individual requires basic health care to address health problems as they arise, so do children and adults with developmental disabilities. However, it is imperative for someone with a developmental disability to see a health care provider regularly, as they are more likely to have gastrointestinal symptoms, asthma, eczema and skin allergies when compared with the general population, according to the CDC.
Some patients with developmental disabilities also have complex medical conditions.
“I think this is the area that becomes even more challenging,” Levey said. “For example, the vast majority of patients with spina bifida are unemployed as adults and often have great difficulty finding adult health care providers. There are also problems associated with patients with developmental disabilities who also have other chronic conditions that adult specialists are not knowledgeable in.”
Among developmentally disabled patients, especially those with a condition such as spina bifida, the transition from pediatric to adult care can be difficult because while the pediatric world has clinics across the U.S. set up specifically for children with spina bifida, there are only five clinics that are truly adult spina bifida clinics.
“Even when the specialist exists, there is still a gap in training,” Levey said. “Children with certain conditions did not live past childhood 50 years ago, but now, because of advancements in care, are living well into adulthood.”
Differences in care
Lynn F. Davidson, MD, attending pediatrician in the division of general pediatrics at the Children’s Hospital at Montefiore, said that it is difficult for the patient/guardian/pediatrician to let go of pediatric care and move on to the adult medical world.
“The patient and their family have been with their pediatric provider for 21 years, most times, and it is hard to move on, but it is an important and major step to take,” Davidson said during an interview with Infectious Diseases in Children.
There are significant differences between pediatric and adult care, which may impact adherence to follow-up visits by young adults with developmental disabilities. While pediatric care is family oriented and relies on significant parental involvement in decision-making, adult care is patient-specific and requires autonomous, independent skills of patients, without many interdisciplinary resources.
“There are a lot of obstacles and challenges that occur — the culture and style of care that is delivered in most pediatric vs. adult settings is quite different,” Christopher Hanks, MD, pediatric and internal medicine specialist at The Ohio State University, said during an interview. “In pediatric settings, there is generally additional support in every step of the process. Pediatricians are likely to help the patient and the family set up appointments with specialists and help them navigate through the challenges. If something falls through, they are more likely to follow-up and figure out why.”
Hanks said for adult care, a physician will make recommendations and provide the patient with referrals, but adults are expected to follow through on their own and self advocate.
Another difference is that there are developmental pediatricians for the pediatric population who often help with coordination of care and referral to other specialists. In the adult world, there is no equivalent to the developmental pediatrician.
“However, there are some developmental pediatricians who do see adults — I have seen a lot of adults in my practice,” Levey said. “There are other pediatricians who see adults because we know that the services are not available elsewhere. It depends on whether or not there is a pediatric counterpart for the pediatric specialty and, for certain conditions, this is still a major obstacle even when there is an adult counterpart.”
Transitioning the patient from pediatric to adult care is a lengthy process, and most experts agree that the process should begin early.
In a study published in Clinical Pediatrics in February, Davidson and colleagues sought to assess current practices for the transition of youth with special health care needs to adult medical care among New York pediatricians.
The researchers found that only 11% of the 181 respondents had a transitional policy and only 3% begin the process at the recommended age. Moreover, none of the respondents was compliant with all six critical steps from the 2002 consensus statement. Subspecialists were more likely to report compliance with only four of the steps.
Conversely, 92% of respondents identified an adult provider for their patients, and 57% created a portable medical summary.
“Somewhere between 11% and 13% of pediatric practices have a transition policy in place, as reported in various studies,” Davidson said. “I am very proud to say that at Montefiore, we have a transition guideline that has been accepted by pediatrics, family medicine and internal medicine as a guide of how we should think about the transition process.”
To help with the process, the website www.gottransition.org provides various links for resources and ideas about transition, including information about health insurance, sexuality, housing and transportation.
“We need to directly teach the patient about their condition when they are of age to understand,” Levey said. “Teach the adolescent why certain things are being done to them — surgeries, procedures, etc. — so they can organize their own medical history in a ‘care notebook’ so that they have been thinking about the transition several years before it even happens.”
According to Hanks, a lot of pediatricians are not speaking about transitional care and not providing appropriate preparation for their patients.
“The primary problem is that pediatricians are not even discussing it — the conversation is not even happening. When the conversation does happen, it is rushed. Nationally, data suggest that only half of families of children with developmental disabilities are receiving the support they need with the transition process. I suspect that this is because the bar is set too low.”
Hanks conducted a survey in which he asked pediatricians at The Ohio State University, “At what age do you start speaking about transitioning to adult doctors with your patients?”
He found that 20% of those surveyed said they never discuss it, 15% said it was discussed after the patient is 20 years old and only one-third of pediatricians reported that they even mention it before the patient reaches age 18.
“In the pediatric primary care office, we want to avoid the situation in which a 21-year-old patient is surprised when the pediatrician says ‘goodbye’ and sends the patient on their way.” Oscar M. Taube, MD, of Sinai Hospital of Baltimore, said during an interview. “Pediatricians need to inform families early on at the age of 13 and 14 — long before they are going to transition out of the pediatric office — that there is an office policy on transition. There are terrific questionnaires that pediatricians can administer to their teen patients and their parents that ask how ready they are to complete all the tasks they need to transition to adult care successfully.”
Taube said the next step for the pediatrician in the transitional process is to produce a useable workable summary that can move along to the new adult physician so that he or she knows what is going on with the patient.
“A good pediatric office should keep a registry of their patients who are heading to adulthood,” he said. “Then within a couple of months after the transfer takes place, there should be follow-up to ensure things went smoothly.”
‘It takes a village’
Alice Kuo, MD, associate director of the UCLA center for Healthier Children, Families & Communities, and associate professor of internal medicine and pediatrics at the David Geffen School of Medicine at UCLA, said that reorganization is needed among communities around adults with developmental disabilities.
“The phrase ‘it takes a village’ to raise a child continues with regard to an intellectually disabled adult — they act like a child throughout their entire lifespan,” she said during an interview. “Organizing our services and programs around these families to help support them is really what needs to happen. When speaking about autism in particular, I think preparing our communities and organizing them in such a way to support the diversity of abilities in adults would greatly help families with the transition into adulthood.”
At Ohio State University, Hanks and his team use transition readiness assessment scales that have been developed by other groups to engage the skills the patient has and identify their deficiencies so they can be supported.
“We have a social worker that helps with identifying additional services or navigating systems to get them to other providers and other needed support systems,” he said. “If they are still in school, we coordinate with their schools. If they are trying to find work, we try to coordinate with agencies that provide those types of services. We are trying to create a network of medical specialists that have an increased interest and comfort in providing care for these patients so that when other medical needs arise, we have people to care for what can be a more challenging population to support.”
Lynn F. Davidson
Taube said proper support takes significant manpower, and a lack of office personnel is another challenging issue.
“In an ideal pediatric office, there would be somebody designated as the transition care coordinator,” he said. “At my hospital, I am looking into grant support to hire a family nurse practitioner who knows enough about pediatric and adult diseases so that they can help with the transition. I would love to have more therapists who are comfortable with adults with disabilities. I recently conducted a focus group of parents of autistic children, and they were very vocal about this — there is a shortage of adult therapists who are comfortable with the mental health needs of children with developmental disabilities. We need people in our offices who can shepherd this through.”
Once the pediatric patient ages out of the school system, they are faced with social issues and can sometimes become isolated due to a lack of social relationships.
“Specifically speaking about families of children with autism, at least in my experience, most will not say that health care is their number one priority,” Levey said. “They will say it is making sure that the patient has appropriate placement after leaving high school and what support systems are available in order for them to get there, such as a day program, work program or a community college experience. I think there is a role for us as health care providers, helping families shape and facilitate this and provide them with resources available in the geographic area.”
Kuo agreed that it is easier for families to access services and get support from the school system. “Also, as a community, we are more tolerant of the child with developmental disabilities,” she said. “There is more sympathy or empathy for the parents of the child, but when [they are] an adult, it is a little bit different. I think our society is a little less tolerant of adults, especially of those who have behaviors that are perceived to be disruptive. This is not any fault of their own.”
Hanks said that in many cases, once these patients graduate from high school, they lose the support and are left in a void where they end up spending most of their time at home.
“One of the biggest challenges these adults face is not the disability itself, but that this disability led them to a situation where they are socially isolated, which may lead to social anxiety, obesity, diabetes and depression.”
These social issues surrounding the transition from pediatric to adult care for patients with developmental disabilities recently gained attention in Congress. In April, Paul T. Shattuck, MD, head of the Life Course Outcomes program at A.J. Drexel Autism Institute, was invited to testify in Congress on the “aging out crisis” of youth with autism.
Shattuck and colleagues recently conducted a study that found that adults with autism have limited opportunities in terms of continued education and careers — life beyond high school. “They are not in school, they are not working and they are not receiving any job training or government-funded services,” Shattuck said in a press release. “Something is pretty broken.”
On the horizon
Kuo said that policywise, the transition from pediatric to adult care has been identified as an important health indicator by the Maternal and Child Health Bureau for more than 20 years.
“I think the challenge is the age group. Policies that are focused on children are focused on children,” she said. “When politicians are advocating for adults, there are so many competing special interests and this population of adults with developmental disabilities get lost in the system. While there has been recognition that is important with policies and procedures, the programs supporting these policies have not kept up with the need or demand.”
In 2014, the Maternal Child and Health Bureau supplied funding to create a national research network focused on autism transitions.
“It was created to draw attention to the issue and to encourage researchers to conduct more research in this area,” Kuo said. “Hopefully this will trickle down to patients and their families. We are very focused on action research — meaning research that can be easily translated into communities and programs that benefit patients and their families.”
Regarding health insurance, Levey said a lot of adults with developmental disabilities have Medicaid as their primary insurance, but most primary care adult providers do not accept Medicaid.
However, according to Taube, the Affordable Care Act should begin to address the “insurance cliff” these patients face. This is one of the reasons why the act was created and as it gathers steam and moves forward, he hopes this problem will be solved, he said. – by Jennifer Southall
Davidson LF, et al. Clin Pediatr. 2015;doi:10.1177/0009922815573940.
McManus MA, et al. Pediatr. 2013;doi:10.1542/peds.2012-3050.
Shattuck PT, et al. National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, 2015.
Got Transition. www.gottransition.org. Accessed May 15, 2015.
CDC. Facts about developmental disabilities. www.cdc.gov/ncbddd/developmentaldisabilities/facts.html. Accessed May 15, 2015.
For more information:
Lynn F. Davidson, MD, can be reached at Montefiore Medical Group-Family Care Center, 3444 Kossuth Ave., Bronx, NY 10467-2410; email: RMCCALL@montefiore.org.
Christopher Hanks, MD, can be reached at The Ohio State University Internal Medicine and Pediatrics at Hilliard, 3691 Ridge Mill Dr., Hilliard, OH 43026; email: Sherri.firstname.lastname@example.org.
Alice Kuo, MD, can be reached at the UCLA Center for Health Children, Family & Community, 1100 Glendon Ave., Suite 850, Los Angeles, CA 90024; email: email@example.com.
Eric Levey, MD, FAAP, can be reached at the Kennedy Krieger Institute, 707 North Broadway, Baltimore, MD 21205; email: firstname.lastname@example.org.
Oscar M. Taube, MD, can be reached at Sinai Hospital of Baltimore, 5101 Lanier Ave., Baltimore, MD 21215; email: email@example.com.
Disclosures: Davidson, Hanks, Kuo, Levey and Taube report no relevant financial disclosures.
What physicians are most appropriate for long-term care of the adolescents and young adults with special needs transitioning to adult services: internal medicine vs. family medicine vs. combined internal medicine and pediatrics (med-peds)?
Primary care responsibility should reside with the physician most familiar with patient issues.
In terms of who might best suited to care for these young adults, It could be any of these people – the internist, family medicine or med-peds physician. The most important thing is that it should be someone who has an interest in developmental issues, provided they are willing to take the extra time to deal with the legal, financial, and psychological issues that are day-to-day problem solving issues that arise for developmentally-disabled young adults and their families.
If the patient has an associated medical problem, such as complex congenital heart disease in the patient with Down syndrome, then it might be that a med-peds physician would be more comfortable than a pure internist. However, it is anyone who has a commitment to this population. There are pediatricians who do this, but my gut feeling is that the physician who knows the patient best should be the one transitioning the pediatric patient.
This period of time is stressful. In a busy pediatrician’s office, there may not be time for this, so there may be a transition team within a physician’s office and often a social worker involved as well. At my institution, we have a team like this with a social worker, psychologist, nurse and myself. For young adults who have multiple subspecialty providers, it is complicated getting every provider in the same network and on the same health plan. A team approach can help with this. One of the largest challenges is setting the patient up with all new providers in ways that are feasible for both the patient and the family.
Nancy Fritz, MD, is an adolescent medicine specialist at La Rabida Children’s Hospital in Chicago. She can be reached at E 65th Street at Lake Michigan, Chicago, IL 60649. Disclosure: Fritz reports no relevant financial disclosures.
The issue of transition of young adults with chronic childhood illness/diseases is not a challenge with a ‘one-size-fits-all’ solution.
Many, if not most, young people can transition to the adult health care world with a referral to an adult provider and a set of records. Some people may even remain in their current medical home if it is led by a family or med-peds physician, or a pediatrician who cares for youth into adulthood. Both fortunately and unfortunately, there is a growing population of young adults with complex health care needs who require a longitudinal plan and a structured transition; a few may even require ongoing support for a prolonged period of time until their adult care is secure.
These patients with challenging transitions may be complex because of family resource limitations, neurocognitive issues, reliance on medical devices and/or complex conditions requiring specialized medical knowledge and skills. In my view, these patients are usually are best served by a multidisciplinary team with expertise in medical and psychosocial issues, as well as a ‘foot in the door’ of the adult medical world and can facilitate the transition and minimize the risk of issues ‘falling through the cracks.’ The detailed knowledge, tools and skills required to effectively transition these complex patients is, unfortunately, not a standard core competency in any of the primary care residency program curricula nationally; although the Med-Peds Program Directors Association and other organizations are working to rectify this. Until these resources are more widely disseminated and utilized in the US primary care residency training programs and in CME venues, we will continue to see young adults with medical issues who suffer ill effects which could have been prevented by an effective transition.
Robert Hopkins, MD, is a Med-Peds specialist at the University of Arkansas for Medical Sciences in Little Rock. He can be reached at 4301 West Markham, Slot 641, Little Rock, AR 72205. Disclosure: Hopkins reports no relevant financial disclosures.