Transitioning Youth with Special Needs to Adult Care

From The Child's Doctor, Spring 2010

Parag K. Shah, MD

Site Leader, LaRabida Children’s Hospital, Ann & Robert H. Lurie Children's Hospital of Chicago; Instructor in Pediatrics, Northwestern University Feinberg School of Medicine

Disclosure: Dr. Shah has no industry relationships to disclose and does not refer to products that are still investigational or not labeled for the use in discussion.

Other Disclosure Information

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Summary

In the United States, there are currently 13 million children with special needs due to chronic conditions, such as congenital heart disease, cystic fibrosis, spina bifida, and others, and 90% of these children are expected to survive into adulthood.[1,2] Beyond the ability to survive, the potential for these children to thrive in adulthood has greatly increased as well. New laws and opportunities regarding employment, education, and independent living for medically complex youth have been instrumental in strengthening their ability to live with hope, pride, and dignity. Along with increases in survival and opportunities come the challenges of assuring that these youth are prepared to navigate an adult world not designed for youth with special needs. By implementing a structured transition program in their practice, pediatricians can help adolescents with chronic conditions acquire the necessary skills to manage the various aspects of their care in the adult healthcare systems.

Challenges of transition

Since the late 1980s, there has been an increasing awareness within the medical community of the exponentially growing number of pediatric patients with chronic illnesses who are surviving childhood and entering adulthood, as well as the formidable challenges they face in doing so. In 1989, Surgeon General C. Everett Koop convened a conference labeled “Growing Up and Getting Medical Care,” where he first coined the term “transition,” and addressed the deficiencies in the healthcare system for these youth as they enter adult systems of care.[3]

As children undergo the process of transitioning to adulthood, they deal with multiple changes in their lives. As they mature, all children are faced with the increased responsibilities required of adulthood, along with physical changes in their bodies and a variety of social pressures. For youth with chronic medical conditions, the responsibilities are greater, and the changes more complex.

One of the major challenges is the cultural change they encounter as they move from pediatric to adult oriented systems of care. Pediatric healthcare provides family-centered, comprehensive services, generally in a single location, and allows parents to control decisions. In contrast, adult systems provide individual, disease-centered care, leave the responsibility for multidisciplinary management to patients, and assume patient independence in medical decision making.[4] Furthermore, these youth are often confronted with a loss of insurance and limited access to services and providers. Given all these changes, it is not surprising that many adolescents with chronic illnesses transitioned to adult-centered care experience poor clinical outcomes, increased loss to follow-up, increased hospitalizations, and increased morbidity.

To address these issues, numerous prominent medical associations and disease-specific organizations have developed guidelines for pediatric medical homes to help successfully “transition” pediatric patients into the adult world.[5,6] Ensuring that youth receive successful transition services is also one of the core outcomes the Maternal and Child Health Bureau listed in the “Healthy People 2010” goals.[7]

Creating a structured transition program

The American Academy of Pediatrics (AAP) has formally defined transition as “the purposeful and planned movement of adolescents and young adults with chronic conditions from child-centered to adult-centered care.”[5] Current thinking by leading societies and expert opinion revolve around creating a structured transition program to ready young adults for adulthood and the adult care medical setting.[6] Surveys of adult providers and focus groups of adolescents further support this approach.[8]

A written transition plan should be developed that outlines how the child is to be taught the skills necessary for managing his/her health as an independent adult. The plan should also include discussions of goals regarding education, employment, and independent living, and where the youth will obtain emergent care.[9] Using a transition checklist can help ensure that pediatricians address all aspects of care, and completion of a checklist could entail “graduation” from the transition program. (See a sample transition checklist in Table 1.)

It is important to understand that transition is a process that takes place over time, and is not just the event of transferring medical care.[5] Transitioning will happen regardless of whether a plan exists or not. A successful transition, however, is measured by how the youth fares in adulthood, medically, financially, and socially. The following elements are recommended for all structured transition programs for youths with special needs [5,6,10-13]:

Start early: Pediatricians should begin to discuss transitioning with patients and families at an earlier age than is commonly believed. Current expert opinions suggest starting transition discussions around age 11 and having a transition care plan by age 14.[5,14] This sets the stage for a collective partnership between the provider, parents, and child to work on the child’s preparation for adult care.

Support new pediatrician/parent/patient dynamics: The changing roles and dynamics between the pediatrician, parent, and patient need to be acknowledged. The pediatrician and parent should gradually move from a director to a consultant role, while the patient should move from recipient to participant to manager role. Pediatricians should begin giving patients new developmentally appropriate responsibilities, such as presenting their own concerns, in the early teenage years.

Educate patients on managing health needs: Pediatricians should help adolescents with chronic conditions learn about their disease and related medications, including the purpose, side effects, and dosage. Furthermore, youth should be taught the necessary skills to manage their healthcare needs, including how to refill prescriptions, make appointments, present themselves to providers, and access chronic and acute medical care.

Create portable medical record summary: This has been cited by adult providers as one of the most desirable components of transition, and yet is very seldom done by pediatric providers.[15] A portable medical summary should be short and succinct, electronic, and easily updatable. Since families obtain care at various places, the summary should ideally be accessible to the patient. Examples of such summaries and assistance in creating them are available at online sites, including Google Health (www.google.com/health) and Healthy and Ready to Work (www.hrtw.org). A good portable medical summary should contain an active problem list, important historical problems, current medications and significant past medications, devices and equipment needed, care providers for chronic conditions, plans for emergency care, and information about the patient’s functional limitations. Many families may not have the means or ability to maintain such a record, however. In these cases, an attempt can be made to provide a family with something they can take to other providers, such as information on a flash drive. At the least, the primary provider can maintain a record summary at the office to be used for any transfer of care that may arise, including transition to adult providers.

Discuss general adolescent issues: Discussion should also occur not only around health issues, but general adolescent issues including sexuality, risk-taking behaviors, substance usage, mental health and depression, sleep hygiene, plans for future education or work, management of finances, consent and confidentiality issues. These are all areas where the young adult will be challenged with increased responsibility and may need guidance and support in developing a plan.

Address health insurance coverage: This remains one of the biggest challenges for young adults. The rate of uninsurance among young adults aged 19-29 is 29%,[16] well above the rate for the rest of the nation, and youth with more severe disabilities may have higher rates than this.[17] Health insurance and disability benefits remain complex and often state driven. Consultation from a social worker or other benefit specialist can be crucial. Public insurance is available for young adults who meet disability and income criteria (less than $928 per month in 2009). The Health Benefits for Workers with Disabilities program further expands the amount that disabled adults can earn and still qualify for public medical insurance plans. Families with private insurance should contact their insurance company. Many children who remain dependent and are disabled are eligible to remain on parental benefit plans for life. With healthcare reform law, all dependent young adults can remain on parental insurance plans through age 26, effective with plan years beginning September 2010 and after.

Plan prior meetings with adult providers: If possible, plans to meet the adult providers before the transfer of care occurs can ease and facilitate the transition. Pediatricians or subspecialty providers in tertiary centers can help facilitate this by conducting joint clinics between the pediatric and adult specialty centers, having someone from the pediatric staff go with patients to their first appointments with adult providers, or creating a video introduction to the adult facility that can be viewed from the pediatric office. Pediatricians in the community may not be in a position to offer these services, but may be able to continue to provide care as the young adult starts meeting with adult providers until the patient is comfortable with the new physician, emphasizing again that transition is a process, not an event. Also, pediatricians should discuss and introduce the adult emergency care system, as this may be one of the scariest elements of healthcare for the young adult patients.

Billing for transition services

Currently, less than one-third of pediatricians report providing many of these transition services. Lack of time and reimbursement for transition services remains a significant barrier to providing care. Billing options, while limited, do exist. Services provided by physicians or advanced practice nurses (APNs) may be billed using standard evaluation and management (E/M) codes (99201-215) or consultation codes (99241-245). Each code is associated with a typical time. Time criteria can be applied to determine the appropriate E/M level for the visit when counseling represents greater than 50% of the face-to-face time for the visit (which is common when providing transition services). Furthermore, if a consultation is done as part of the visit resulting in a long visit, prolonged services codes can be employed (99354-99355). These service codes can be used if the physician spends 30 minutes beyond the time listed for the highest E/M code in that category (99205, 99215, 99245). The key aspect to billing these services is to document the specific counseling delivered and the exact time in the note. Other codes to consider are care plan development and oversight (99339-99340), team conference (99366, 99368), group counseling visits (99411-99412), and prevention and education counseling (99401-99404).

Conclusion

As more and more youth with complex chronic conditions survive into adulthood, it becomes the responsibility of the healthcare system to fully prepare these youth for the adult world. Young adults not prepared are more likely to have poor health outcomes. A structured transition program may help improve these outcomes. Such a program should involve creation of a portable medical summary, development of skills necessary to independently care for one’s own health, as well as discussions around high risk behaviors, consent and confidentiality, employment, educational, and financial planning, and procurement of health insurance. By providing these transition services according to a structured plan, pediatricians can significantly help their patients with special needs thrive in adulthood.

References

[1.] Gortmaker SL, Sappenfield W. Chronic childhood disorders: prevalence and impact. Pediatr Clin North Am Feb 1984;31(1):3-18.

[2.] Blum RW. Transition to adult health care: setting the stage. J Adolesc Health Jul 1995;17(1):3-5.

[3.] Surgeon General’s Conference. Growing Up and Getting Medical Care: Youth with Special Health Care Needs. In: McGrab P, Millar H, eds. Washington DC: National Center for Networking Community Based Services. Georgetown University Child Development Center; 1989.

[4.] Lundin CS, Ohrn I, Danielson E. From multidimensional support to decreasing visibility: a field study on care culture in paediatric and adult diabetes outpatient clinics. Int J Nurs Stud Feb 2008;45(2):180-190.

[5.] American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics Dec 2002;110(6 Pt 2):1304-1306.

[6.] Rosen DS, Blum RW, Britto M, et al. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health Oct 2003;33(4):309-311.

[7.] Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services. Healthy People 2010.

[8.] O’Connell B, Bailey S, Pearce J. Straddling the pathway from paediatrician to mainstream health care: transition issues experienced in disability care. Aust J Rural Health Apr 2003;11(2):57-63.

[9.] White P. Destination known: planning the transition of youth with special health care needs to adult health care. Adolescent Health Update Aug 2009;21:3.

[10.] Scal P. Transition for youth with chronic conditions: primary care physicians’ approaches. Pediatrics Dec 2002;110(6 Pt 2):1315-1321.

[11.] Blum RW. Introduction. Improving transition for adolescents with special health care needs from pediatric to adult-centered health care. Pediatrics Dec 2002;110(6 Pt 2):1301-1303.

[12.] Reiss J, Gibson R. Health care transition: destinations unknown. Pediatrics Dec 2002;110(6 Pt 2):1307-1314.

[13.] American Academy of Pediatrics Committee on Children with Disabilities. The role of the pediatrician in transitioning children and adolescents with developmental disabilities and chronic illnesses from school to work or college. Pediatrics Oct 2000;106(4):854-856.

[14.] White PH, Hackett P. On the threshold to the adult medical home: care coordination in transition. Pediatr Ann Sep 2009;38(9):513-520.

[15.] McManus M, Fox HB, O’Connor K, et al. Pediatric Perspectives and Practices Transitioning Adolescents with Special Needs to Adult Health Care. Fact Sheet No 6: National Alliance to Advance Adolescent Health; October 2008.

[16.] Nicholson JL, Collins SR, Mahato B, et al. Rite of passage? Why young adults become uninsured and how new policies can help. 2009 update. Issue Brief (Commonw Fund) Aug 2009;64:1-20.

[17.] Wang G, Grembowski D, Watts C. Risk of losing insurance during the transition into adulthood among insured youth with disabilities. Matern Child Health J Jan 2010;14(1):67-74.

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