To work in pediatrics is to have hope. Every day in the world of pediatrics we hope that the work we do impacts the children we see for a lifetime. We hope they will grow, we hope they are strong. We hope the choices we help them make today lead to a path of health and happiness, and eventually to a ful lling adult life. Suddenly, the end of that path becomes a bit hazy for the adolescent with chronic conditions. Clinicians in the adult system are infrequently prepared to treat the variety of conditions seen in pediatrics, and the few providers who are available to this population struggle to absorb the growing number of older patients with childhood-onset disorders. Patients are frequently ill prepared to take on the responsibilities required to manage their own care; the pediatric system lacks functional processes for teaching patients how to develop these skills.
Our young adults with complex conditions long to move forward, but they do not know where to go. As medical care for the child with complex diseases becomes more advanced and sophisticated, so too grows the vacuum of care for the adult with childhood- onset conditions. It can be a great challenge for providers and families to bridge the gap from pediatric to adult specialty providers, particularly if the patient requires multiple specialties continue through the transition.
Bridging the Gap
The American Academy of Pediatrics has put forth a great effort in the past decade to support the concept of transitional care for the adolescent into adulthood through the primary care provider (2011). The Academy states, “optimal health is achieved when each person, at every age, receives medically and developmentally appropriate care.” There are transitional readiness assessment tools and algorithms to guide decision-making, but no customizable methods for the complex patient. There are recommended timelines for nding adult providers, but there is no assurance there will be
enough willing practice groups. Our transitional care models remain largely conceptual, with high barriers to entry.
In the midst of these changes, young adults with high-need medical conditions can fall through the cracks and get into serious trouble. Without proper maintenance treatments and attention, this patient population goes by unnoticed until much larger problems surface. Additionally, many patients are independent enough to pursue the amount of care they desire without intervention from parents or legal guardians. As young adults continue to develop in maturity, they may not fully understand the long- term importance of structured follow up for chronic conditions. Adult spina bifida clinics reviewed in 2014 in Utah and Minnesota revealed that 85% of young adults seen for initial evaluation reported an active issue, 34% of which would require surgical intervention (Summers et al., 2014.) These outcomes are deeply disappointing for providers, costly to society, and often tragic for the patient.
Embracing the Process
The act of transitioning into adult practices is not a matter of a single event, but a product of dedicated
work by many invested individuals. This process can be affected by many factors including how the patient understands and values the transition, and the number of transitions taking place at the time. For the cognitively intact patient, this transition may come around the end of adolescence, a time in life that is inherently stressful for young people. For the patient with psychosocial delays, a time for transition may be chosen around a disease-free interval (Lambert, 2015.)
Along with the change in providers, the patient may also have to consider changes to insurance coverage, informed consent, transportation and many other new adult responsibilities. It would be unfair and inappropriate to expect a young person to handle so many new issues alone. Providers, patients and their families share this responsibility, and need to develop a collaborative relationship. These efforts require a strong commitment from the patient and family, but the providers certainly take on a large part of the process. Providers frequently have clinics that are over capacity, and struggle to keep up with the needs of the populations they serve. At times, the adult transition of one patient may seem beyond the scope of the pediatric provider. However, the issue of transitional care has its basis in the very underpinnings of the medical profession’s ethical beliefs.
Breaking It Down
If the examination of ethics seems a bit esoteric, breaking it down to its four core principles helps ground it in reality: Autonomy, Justice, Nonmale cence and Beneficence. Children becoming adults certainly brings to mind the concept of autonomy, as parents and providers learn to accept the choices of the developing youth. Much like parents, providers bear the responsibility of fostering a trusting relationship with their patients. From this relationship, patients gain the knowledge and con dence to serve them in their journey to adulthood, and beyond.
Youngsters need time to process these changes, so conversations about transitions are best had early and often. Practice makes perfect, as patients gradually take ownership of their medical conditions and learn to use the resources available to them. Finding an adult provider who is ready to accept a transitioning patient will take many resources, including knowledge of insurance coverage and existing local specialty practices. This may take a considerable amount of time; a point that should be communicated clearly to families and caregivers.
True autonomy can only exist when one understands all the rights and responsibilities allotted to an individual, and exercises them with purpose. Everyone bene ts from the creation of informed consumers. In the case of patients who cannot advocate for themselves, the care team supports the development of the legal guardianship necessary to promote the patient’s best interests.
Justice For All
In some cases, a decision of best interest can be made almost unanimously among a care team. When considering the best interests of society at large, risks and bene ts are continuously weighed to maintain a careful balance. This system of Justice gives all citizens the freedom to pursue their goals with the knowledge that resources will be allotted fairly. Justice in healthcare is no different, and we expect no less. Fair distribution of goods and services results from accurate assessment of needs and priority of service delivery. The needs of individuals with chronic conditions are continuous and may increase over time, in contrast to the needs of an acutely sick child. Both levels of care are important, and failing either vulnerable population is a disservice to our system.
Justice is achieved in healthcare when patients are able to access and use the appropriate services at the right time. A study of adolescent and young adult Medicaid patients in North Carolina looked at the health care utilization rates in a sample of young persons with chronic conditions (Phillips et al., 2015.) The patients’ average age at time of diagnosis was 9 years old, and average age at the time of study was 19 years old. These patients with childhood onset conditions had signi cantly higher emergency department use, as well as longer inpatient stays during their Medicaid lifetime coverage. Although patients with chronic conditions are expected to have higher healthcare utilization, emergency department visits and hospitalizations are not the best use of resources.
Appropriate transitional care for the young adult with chronic diseases goes far beyond hospital doors. Educational level and professional success achieved into adulthood are tremendously impacted by the care established during transitional years. Standardized educational advocacy tools, such as Section 504 of the Individuals with Disabilities Act and Individualized Education Plans, are well known today. These tools help to promote schools, parents, and providers working together to ensure continuing education for special needs children. While far from a perfect system, these tools provide a framework for customized education goals. The process of moving into the workforce, if that is a possibility, can be even more challenging for an adult with special circumstances.
A longitudinal study found that approximately half of adults with childhood onset Systemic Lupus Erythematosus (SLE) were unable to achieve full employment after completing their desired level of education (Lawson et al., 2014.) In the American health care system, employer-based health insurance remains the dominant means of health care coverage. Persons with childhood onset conditions who do not have adequate support into adulthood may lose the ability to support themselves financially. Without proper insurance and access to long term follow up, inappropriate healthcare utilization increases. Justice is in jeopardy when patients with chronic diseases become a danger to themselves and a burden on society.
Start the Conversation
Providers practice nonmale cence daily, considering the potential harm to a patient with every decision they make. Patients, however, did not take an oath to protect themselves; children and adults alike may frequently make questionable choices for a variety of reasons. A large part of developing independent young adults involves creating systems and boundaries. Parents and providers alike must allow children to gain increasing levels of freedom in preparation for adulthood. In the process of transition, the care team must foster an environment where patients can develop a sense of Nonmale cence to apply towards their own care.
Caregivers feel a heightened sense of responsibility over medically complex children, often sheltering kids from the realities and responsibilities that their management entails. To ensure their safety as they grow older, patients must gradually gain an understanding of the risks associated with their chronic conditions. Children want to be engaged by their providers, become knowledgeable of their conditions, and take on challenges. They only need the tools.
Setting patients up for a successful transition requires starting the conversation. The concepts of bene cence and nonmale cence prescribe balancing the good we do for our patients with the potential harm that doing so may entail. Transitional care is an example of an action whose bene ts far outweigh any potential harms. In fact, if the transition plan is properly executed, there will be no harms in the sense in which nonmale cence is generally understood1; the burden of learning to manage one’s medical care is one which cannot be avoided. Moreover, learning the skills necessary to do so is of bene t to the patient in that those skills can be used in other aspects of life where decisions must be made in light of evaluating one’s circumstance. Taking action towards the good of the patient encapsulates Bene cence, and allows the care team To move beyond the conceptual model of transitional care, the healthcare team. There are many models to help begin the planning for the transition from pediatric to adult provider. Each patient will need a unique plan that works for everyone the care team involved. There can be timelines, goal sheets, check lists and coordinators; but above all, there must be a commitment. Patients and parents, or caregivers, must make time to incorporate changes and planning. Providers must keep the dialogue going, and offer support where needed.
With time, patience and strong communication, the role of transitional care in the community will expand. Medicine always adapts to the needs of the population, and these needs will only continue to grow. Patients and providers must advocate for health care changes that support the current
landscape. Increasing the number of adult providers with experience and training in childhood onset conditions will be crucial to the safety of complex transitions. Care coordinators and case managers dedicated to this cause are invaluable to patients and families. As processes improve, there may be gaps in resources that are unforeseeable at this time. So long as there are dedicated individuals who care about making signi cant changes, there will be hope. To work in pediatrics is indeed to have hope, and we are here to keep that hope alive.
“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not” – Dr. Seuss
Marcela D. Monti DNP, CPNP–CP
(contact information not available)
The Author has disclosed no conflicts of interests
References
American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, Transitions Clinical Report Authoring Group.(2011). Supporting the health care transition from adolescence to adulthood in the medical home. American Academy of Pediatrics, 128 (1), 182-200.
Lambert, S.M. (2015). Transitional care in pediatric urology. Seminars in Pediatric Surgery, 24, 73-78.
Lawson, E.F., Hersh, A.O., Trupin, L., von Scheven, E., Okumura, M. J., Yazdany, J., & Yelin, E.H. (2014). Educational and vocational outcomes of adults with childhood- and adult-onset systemic lupus erythematosus: 9 years of follow-up. Arthritis Care Res, 66 (5), 717-724.
Phillips, A., Fenton, N., Cohen, S., Javalkar, K.,& Ferris, M. (2015). Self-Management and health care use in an adolescent and young adult medicaid population with differing chronic illnesses. Preventing Chronic Disease, 12, 15451151.
Summers, S.J., Elliot, S., McAdams, S., et al. (2014). Urologic problems in Spina Bifida patients transitioning to adult care. Urology, 84(2), 440–444.