Ventilator-Assisted Living©

Summer 2003, Vol. 17, No. 2

(continued)

Adolescence: Transitioning from
Pediatric to Adult Care

Howard B. Panitch, MD, and Cherie DeBrest, MSS,
The Children’s Hospital of Philadelphia

“The goal of transitioning is not to remove parents from the team when the child reaches the age of majority, but to place the young adult in control of his or her health care needs ...”

Advances in medical care have resulted in an increased rate of survival of children with life-threatening conditions, many of whom have neuromuscular disease (NMD) and who may develop progressive respiratory muscle weakness. However, the weakness may not impair breathing until later adolescence.1,2

These children will require chronic respiratory support, either part- or full-time, during adolescence or young adulthood. Teens who survive severe spinal cord injuries (the incidence of severe spinal cord injuries in children has two separate peaks, with the later one occurring in mid-adolescence in association with sports injuries and more risk-taking behavior3) will also require chronic respiratory support.

In our home ventilation program of more than 220 ventilator-assisted children, approximately 15% are over 16 years of age. More and more are reaching an age when they would traditionally seek medical care from internists or family practitioners. Paradoxically, they continue to be followed by pediatric sub-specialists in pediatric hospitals. The reasons for this are numerous and complex,4 and involve the children, their families, physicians, and health care systems.

Adolescence is about spontaneity, risk-taking, and asserting oneself among the peer group. As these teens try to become independent and separate emotionally from parents or other adult caregivers, their care can become more complex. Limitations in mobility necessitate assistance with transfers from bed to chair, more specialized equipment, and architectural changes around the home. The adolescent should be physically and emotionally pulling away from the parental safety net, but instead must remain squarely within it.

As the health status of older adolescents changes, they may feel particularly vulnerable and, therefore, unwilling to transfer trust in medical caregivers to a new health care team. Care needs also can become more complex because other body systems (i.e., cardiac, digestive, renal) may become involved and require the attention of additional sub-specialists.

Family attitudes towards the natural course of a child’s illness may influence both parents and child. Families of ventilator-assisted adolescents may feel uncomfortable transitioning to adult programs. For example, expectations about survival of children with NMD into adulthood5 may be low enough that the families do not want to expend their efforts on meeting new health care providers at this late stage of the child’s disease.

A paradigm shift occurs in the relationship between parent, child, and the pediatric and adult health care systems. Pediatricians are accustomed to considering a child as dependent, with health care decisions largely reliant upon parental influence. Internists view the patient as the decision-maker and the person who ultimately determines the medical course.

Adolescents who successfully take their college entrance tests may hesitate to answer questions during routine pulmonary office visits or defer important decisions (such as when to shift from noninvasive mechanical ventilation to tracheostomy) to their parents. Adolescents who are passive participants in the exam room may assert themselves at home through nonadherence.

Some parents need to feel as if they are still ultimately in control, not over the adolescent, but over the disease process. The goal of transitioning is not to remove parents from the team when the child reaches the age of majority, but rather to place the young adult in control of his or her health care needs, with guidance provided by parents and the medical team.

Many of the diseases that result in respiratory insufficiency in later adolescence arise from childhood diseases about which internists are less familiar. Thus, these physicians may be unwilling to assume the care of patients for whom they have not received formal training and whose complex care requires the involvement of multiple sub-specialists.

An independent young adult who is learning how to advocate for herself/himself may not realize how much she/he relies on the accessibility and invaluable case management services provided by nurse practitioners and social workers. Issues with pharmacies, insurance, schools, or transportation may take hours or days to resolve. This amount of quality time is expensive, not well reimbursed, and difficult to obtain in the adult medical world.

The biggest obstacle to successful transitioning of ventilator-assisted adolescents involves insurance benefits. Generally, ventilator-assisted children and adolescents are insured under their parents’ commercial insurance as the primary payer. Medicaid in Pennsylvania is the secondary payer for hospitalizations, durable medical equipment and supplies, and up to 16 hours of skilled nursing care per day.

A cornerstone of home care for ventilator-assisted adolescents is the provision of skilled nurses so the family is able to live, work, sleep, and still have the mental energy to fight disease progression. Seventy-two percent of our adolescents receive skilled nursing care for part or all of the day. Families are trained in all aspects of care, but as care becomes more complex and the child becomes bigger physically, some assistance is mandatory.

When commercial insurance coverage ends, either because of circumstances or because the child becomes too old to remain under the parents’ policy (depending on student status), Medicaid becomes the sole provider for all health care needs. It does not include provisions for shift care nursing delivered in the home for anyone, whether 21 or older. Medicaid deems that someone with a medical condition meeting the criteria for requiring 24-hour skilled care should be in a nursing home environment. (Nick Dupree challenged Medicaid in Alabama on this and won – www.nickscrusade.com.)

Transitioning of ventilator-assisted adolescents and young adults represents a process that, despite many obstacles, remains a worthy and important goal.

References

1. Brooke, M.H., Fenichel, G.M., Griggs, R.C., et al. (1989). Duchenne muscular dystrophy: Patterns of clinical progression and effects of supportive therapy. Neurol, 39(4), 475-81.

2. Bach, J.R., Alba, A. Pilkington, L.A., & Lee, M. (1981). Long-term rehabilitation in advanced stage of childhood onset, rapidly progressive muscular dystrophy. Arch Phys Med Rehabil, 62(7), 328-31.

3. Brown, R.L., Brunn, M.A., & Garcia, V.F. (2001). Cervical spine injuries in children: A review of 103 patients treated consecutively at a level 1 pediatric trauma center. J Pediatr Surg, 36(8), 1107-14.

4. Schidlow, D.V., & Fiel, S.B. (1990). Life beyond pediatrics. Transition of chronically ill adolescents from pediatric to adult heath care systems. Med Clin North Am, 74(5), 1113-20.

5. Boland, B.J., Silbert, P.L., Groover, R.V., et al. (1996). Skeletal, cardiac, and smooth muscle failure in Duchenne muscular dystrophy. Pediatr Neurol, 14(1), 7-12.

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