According to the U.S. Census Bureaus 2013 Population Survey, about 18 million people are poised to enter adulthood each year. As they enter that phase, they face a big question: What do I want to do with my life? These emerging adults must begin taking responsibility for managing their own lives, making decisions about education, employment, careers, healthcare, where to live, relationships, marriage, and all the other complexities of adult life.
For the approximately 750,000 young people with special healthcare needs in this population and their families, the added challenge of managing their conditions as adults makes planning ahead for this transition even more critical. And for those who receive O&P care, there are additional healthcare considerations as well as prosthetic and orthotic needs as they age, which makes it important for O&P providers to work with the larger healthcare team during this transition.
The good news is that many children with complex medical conditions such as cerebral palsy, spina bifida, myelomeningocele, sickle-cell disease, and cancer who years ago would not have survived into adulthood are now living longer. Currently about 90 percent of this population will live longer than 20 years, many for considerably longer (survival rates for a particular disease or disorder may vary from the overall figure).
Were enjoying the success of all these innovations in the last 20 to 30 years in diagnostics, treatments, surgeries, etc., says Albert Hergenroeder, MD, professor, Department of Pediatrics, Baylor College of Medicine, and chief of Adolescent Medicine Service, Texas Childrens Hospital, Houston.
However, despite encouraging news about increased longevity, fewer than half of these individuals receive adequate support and services for successful transition to adult care as they reach 18 to 21 years old and age out of pediatric care, according to a technical brief, Transition Care for Children With Special Health Needs, prepared for the Agency for Healthcare Research and Quality (AHRQ) by the Vanderbilt University Evidence- Based Practice Center (available at tinyurl.com/ndo5rwz). The proportion is even lower for ethnic minorities and children living in poverty. Overall, only one-third of pediatricians report making referrals to adult-care physicians and less than 15 percent report providing transition-related educational materials to adolescents and their parents.
Frequently, when these young adults and their families leave the coordinated, nurturing, interdisciplinary environment of a pediatric hospital or an independent pediatrician who understands their healthcare needs and refers them to appropriate specialists when necessary, theyre suddenly thrust into a world of fragmented, youre-on-your-own healthcare. Physicians who have the knowledge, skills, and willingness to treat complex pediatric-onset conditions may be hard to find. Patients insurance coverage and funding sources may suddenly change for the worse as well.
Many who experience chronic illness are lost to medical care during transition because of a lack of continuity with adult-healthcare providers who frequently do not provide the level of individualized and coordinated care that is considered normal and expected in the pediatric setting, Michael Harris, PhD, and colleagues point out in their article, Transitioning from Pediatric to Adult Health Care: Dropping Off the Face of the Earth (American Journal of Lifestyle Medicine. 2011. 5 (1):85-91).
What Is Transition Planning?
As defined by Got Transition/Center for Health Care Transition, developed through a cooperative agreement between the Maternal and Child Health Bureau and the National Alliance to Advance Adolescent Health Care, transition is the process of changing from a pediatric to an adult model of healthcare with the goal of optimizing health and assisting youth to reach their full potential. This requires an organized transition process to help youth acquire independent healthcare skills, prepare for an adult model of care, and transfer to new providers without care disruption.
Why Are Transition Programs Needed?
When transition involves only an abrupt care transfer, patients may be put at risk of getting lost in the system or experiencing decreased access to care, both of which may be associated with poorer long-term health outcomes, impaired function, and high-cost emergency care, AHRQ points out. Thus, one of the goals of transition care is preventing adverse outcomes.
The health of these individuals can deteriorate if theres not a smooth transition from pediatric to adult healthcare, notes Texas Childrens Hospital online (www.texaschildrens.org).
There are very few adult [-care] providers who understand and know how to manage these neuromuscular conditions, and they are hard to find, says Samuel Rosenfeld, MD, clinical associate professor, Department of Orthopaedic Surgery, University of California, Irvine, and director of the Childrens Hospital of Orange County (CHOC) Spina Bifida Clinic, Orange, California. Most adult [-care] providers have little or no experience with these conditions. Rosenfeld is also director of the Spina Bifida Clinic at Rancho Los Amigos National Rehabilitation Center, Downey, California, and the Spasticity Clinic and Muscular Dystrophy Association Clinic at CHOC.
Although patients of family medicine and Med-Ped (combined internal medicine and pediatrics) physicians can stay with the same providers through adulthood, transition planning is still needed to help young people prepare for an adult approach to healthcare, including managing their own healthcare, understanding privacy and consent, and navigating insurance coverage. Likewise, they may stay with their other healthcare providers including orthotists, prosthetists, and physical and occupational therapists, but their adult care needs may change. For instance, although patients who were shunt-dependent as children are no longer shunt-dependent, they still need yearly urologic evaluations, orthotic care, preventive care to avoid skin breakdown and pressure sores, plus medical device and equipment maintenance, Rosenfeld points out. Patients with sacral myelomeningocele experience ambulatory and neurological status declines with age, he noted in his presentation, Transitioning Spina Bifida Patients from Pediatric Rehabilitation Goals to Adult Rehabilitation Purpose, at the 2014 Annual Meeting of the Association of Childrens Prosthetic-Orthotic Clinics (ACPOC).
Children with amputations or congenital limb loss will need lifetime prosthetic care if they use a prosthesis. Adult survivors of pediatric cancer resulting in amputation or limb-salvage surgery face latent effects of cancer that can include prosthetic fit problems, chronic pain in the residual limb, phantom limb pain, and bone overgrowth, according to the National Cancer Institute. Cancer therapies such as surgery, chemotherapy, and radiation therapy can also affect health in later adult life.
Drawing on research studies, the report concludes that direct benefits of transition planning include improved disease control, decreased hospital admissions, better quality of life, and increased patient satisfaction, but adds that further research is needed to determine how best to implement transition care and whether or not it results in long-term improvement in overall health outcomes.
O&P Clinicians: Aiding Transition
As youth with special needs that require O&P care prepare to transition from pediatric to adult care, O&P clinicians can do much to smooth the way and maintain uninterrupted care. As members of the childrens multidisciplinary healthcare team, they can educate the team about these patients likely future O&P needs and recommend accredited facilities and qualified, certified adult-care colleagues who are experienced in understanding and treating the O&P care needs of adults with childhood-onset conditions. They can aid the team, patients, and families in identifying community and government resources for funding and information for adults needing O&P care. Clinicians can provide transition educational materials, help patients and families understand insurance changes as they age out, including any changes in type or frequency of component replacement or prosthetic devices, which may differ as patients become adults. Practitioners can also help to ensure that their patients thoroughly understand their conditions and how those conditions may affect current and future orthotic and/or prosthetic care. For example, additional decline in neurological and mobility function in patients with spina bifida may change O&P needs for these patients as adults. This education is especially important for the approximately 60 percent of patients not receiving transition assistance. Practitioners can also have information available about resources for vocational planning, college and university assistance, and policies for students with disabilities, housing, and sports and recreation, as needed.
Transition Programs Make Progress
All over the country in every major academic center, programs are developing to enable successful transitioning to adult care, Hergenroeder says.He has been involved in transition planning as a healthcare provider and administrator developing the infrastructure for the Texas Childrens Hospital transition program in partnership with the Baylor College of Medicine Transition Clinic. Hergenroeder also assists programs in other parts of the country and directs the Annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care at the Texas Medical Center, Houston. The transition issue is a very important issue that has been on peoples minds for at least 30 years, and its starting to get traction, Hergenroeder says. But were still in the early phases.
Transition Planning: Taking Steps to Better Healthcare
The pediatric healthcare field has become increasingly aware of the need for planned transition to adult care in order to avoid gaps in care and preventable complications and costs. In 2002, the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians-American Society of Internal Medicine issued a landmark document, A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs, about the first steps the medical profession needs to take to realize the vision of a family-centered, continuous, comprehensive, coordinated, compassionate, and culturally competent healthcare system . (Pediatrics. 2002. 110 (6 Pt. 2):1304-6).
In 2011, the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians built on the 2002 consensus statement. They published a clinical report to provide practical, detailed information about how to implement and adapt better transition processes into their specific clinical setting and patient populations, Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home (Pediatrics. 2011. 128 (1):182-200). The report includes an algorithm for steps from the beginning to the end of the transition process.
The medical home is a key concept in transition planning. Several government and healthcare organizations provide detailed information about the medical home, what it includes, and how it works, including Got Transition (www.gottransition.org); Patient-Centered Primary Care Collaborative (www.pcpcc.org); AHRQ (www.ahrq.gov); and the National Center for Medical Home Implementation (www.medicalhomeinfo.org).
The medical home concept applies to patients of all ages, including those who are healthy and those who need medical treatment. In a medical home, the traditional doctors office is transformed into a central area to organize and coordinate a patients healthcare, based on that patients needs and priorities, explains the Rural Assistance Center (www.raconline.org). At the base is an ongoing partnership between the patient and a specially trained primary care physician [or other qualified healthcare professional, such as a nurse, physician assistant, or nurse practitioner]. Patients receive reminders about appointments and screenings, and other support. The primary care physician helps assemble a team when specialists and other healthcare providers are needed. Rosenfeld notes that the main take-home point from his ACPOC presentation is that we need to develop medical homes.
A variety of transition models have been developed, Hergenroeder says. Some pediatric hospitals are keeping more adults in their facility; some are developing relationships with sister adult hospitals to facilitate patient transfers. For instance, a pediatric patient may be able to simply transfer across the street to the adult hospital with provider arrangements coordinated and medical records transferred. Transition planning may be disease-specific; i.e., a patient with hemophilia may be transferred to a nearby hospital with expertise in that area. Examples of programs with the potential to enhance transition for children with special healthcare needs include use of a separate transition clinic, engagement of a transition coordinator, and a phased transfer within a clinical system, AHRQ notes. However, evidence that one model is better than others needs to be established, Hergenroeder adds.
Although several barriers exist to developing successful pediatric-to-adult healthcare transition programs, the most daunting barriers to implementing transition programs overwhelmingly mentioned by experts and in research include the following:
- Young adults' ability to pay for healthcare
- Lack of adequate compensation to adult-care providers for transition services and time spent
- Lack of available adult-care practitioners with knowledge and experience in childhood-onset conditions that extend into adulthood and willingness to accept these patients into their practice
Harris and colleagues point out that, for healthcare providers, "a major obstacle is the difficulty obtaining compensation for their professional work. Most reimbursement is based on the completion of procedures. However, much of the work and time necessary to provide appropriate transition services involves coordination, shared management, and prolonged service episodes, which are poorly reimbursed if at all, thus diminishing the incentive to provide transition services."
Transition care requires a significant amount of provider timea barrier for adult-care providers, who often are held to benchmarked standards for patient volume and reimbursement levels within their practices. Thus additional time required for transition care can result in financial loss, notes AHRQ. Transition care incorporates multidisciplinary services, which can be costly for clinics that do not use these services for other patients. "With the recent focus on pediatric medical homes, many pediatric clinics have greater access to multidisciplinary care, so this cost difference might be more significant for the adult clinics...," the AHRQ technical brief notes.
Despite the recent spread of the family-centered medical home model for the redesign of primary care, payment reforms for nonencounterbased services such as transition planning and care coordination still have not materialized to a significant degree, according to the 2011 clinical report, "Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home." "The steps involved in the healthcare transition algorithm are intended to be part of existing office visits using well-established billing codes. For youth without special healthcare needs, transition preparation and planning would be incorporated into regularly scheduled health maintenance visits and billed as such," the report states.
Insurance Issues for Young Adults
When adolescents and young adults with special healthcare needs age out of Medicaid eligibility or their parents' insurance, options may be limited or nonexistent. Hergenroeder notes that the Patient Protection and Affordable Care Act (PPACA) was a boon to young adults whose families have private insurance since they can stay on their parents' plans until age 26 and can't be denied coverage due to preexisting conditions when they buy their own plans."There is some coverage for those who are 133-200 percent of poverty level [under PPACA]they can buy a program," Hergenroeder says. "But there is a gap for people who are too poor to afford these programs that needs to be addressed."
Lack of Adult-Care Providers: Closing the Gap
Although not all transition experts agree, the perception of a lack of providers with the experience and expertise to care for this population with special healthcare needs is generally perceived as a major barrier. Hergenroeder suggests some ways to close this knowledge gap to possibly increase the number of adult-care providers who are able and willing to care for adults living with childhood-onset conditions.
- On the individual level, clinics could be established where the adult and pediatric providers attend and learn from each other.
- On the organization level, more continuing education for adultcare providers and more education in medical schools and residencies about pediatric conditions could be provided.
Med-Ped physicians, like family medicine physicians, are trained to care for both adults and children and can help close the provider gap. Training for Med-Peds is four years instead of three, includes more in-depth training in both internal medicine and pediatrics, does not include obstetrics/ gynecology or surgical training, and allows for dual board certification, according to the American College of Physicians. Med-Peds are generally more narrowly trained, but in greater depth, to care for those with very complicated conditions, while family physicians are trained to attend to the broader needs of a family with a clear focus on the primary care of the family unit.
Transition: More than Simply Healthcare
However, for a successful transition and adult quality of life, connecting with a team of qualified adult-care providers and arranging transfer of medical records is only part of the picture. Youth with special healthcare needs (YSHCN) may need guidance and resources about finding housing; pursuing university or other postsecondary education; learning job skills and finding employment; obtaining insurance and other funding; learning to drive, perhaps with an adapted vehicle; and using public transportation, among other essential life skills.
Susan Labhard, MSN, RN, is a transitions nurse specialist directing the transition program at Shriners Hospitals for Children Portland (SHCP), Oregon. The hospital provides healthcare in the Pacific Northwest and Western Canada for children and youth up to age 21 who have musculoskeletal conditions, burn injuries, and other special healthcare needs. "I work with the patient care team to provide successful transition planning to families and caregivers for youth with special health needs," she explains.
"This helps to assure appropriate care, treatment, and orthotic and prosthetic contacts with adult providers after patients leave the SHC-P system. For instance, some patients require additional help to be more independent in toileting when they move away from homewe like to identify those needs while [they are] still in the pediatric system.
Vital to the transition process is working with the community to coordinate the process and to teach patients and families/caregivers how to access insurance, funding, equipment, sports/recreation options, jobs and college, transportation, and supportive or independent living resources when required, Labhard continues. Citing evidence-based practice, she points out that another important part of the transition process for youth and young adults with disabilities is learning to find people to like and love outside the family. The topic of friends, healthy relationships, and sexuality related to the disability is often overlooked by parents and caregivers as well as providers. She adds, As survival rates are increasing, more than physical needs have to be considered for quality of life. We strive to provide a person-centered approach beyond medical needs alone.
Patients, families, and healthcare providers need to be onboard by the time of transfer or handoff to adult care. This can be difficult for patients, parents, and providers since they have often formed strong bonds. Plus they may each feel a lack of confidence in adult-side care. Other questions arise, such as do the young people have the maturity and sense of responsibility to manage their own healthcare? Do they really understand their healthcare needs, medications, and other interventions? Can they make their own appointments and keep them? Will they take their medications as prescribed and on schedule? Will they have transportation arrangements? Do they have the maturity to avoid risky behaviors?
An abundance of guidance, transition tools, and readiness assessment checklists for youth, families, and providers is available from Got Transition, AHRQ, and the American Academy of Pediatrics, among others. For instance, along with other tools, Labhard uses a patient self-screening tool, Planning for Your Future, in which the youth identifies areas such as employment or housing where he or she would like more information or assistance.
The vision of the 2002 Consensus Statement to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate healthcare services that continue uninterrupted as the individual moves from adolescence to adulthood faces many formidable barriers before it becomes reality.
Miki Fairley is a freelance writer based in southwest Colorado. She can be contacted via e-mail at .