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TRANSITION OF THE ADOLESCENT PATIENT TO THE ADULT CLINIC

Marmara University Medical School, Department of Pediatric Nephrology, Marmara, Turkey

Correspondence to: H. Alpay, Marmara University Medical School, Department of Pediatric Nephrology, Istanbul, Turkey. dhtalpay{at}superonline.com

	ABSTRACT

TOP ABSTRACT A FOUR-STEP TRANSITION PROCESS POSSIBLE BARRIERS TO TRANSITION CONCLUSIONS REFERENCES

 

Transition is the purposeful, planned movement of adolescents and young adults with chronic and medical conditions from child-centered to adult-oriented health care systems. For patients with chronic diseases that have begun early in life and continued into adulthood, transition is a very important period requiring not only medical, but also psychological and social support, which should begin on the day of diagnosis. Lack of coordination between pediatric and adult units, resistance of the adolescents and their families, and lack of planning and institutional support are a few of the numerous hardships that are encountered while trying to sustain a successful transition. This article reviews the steps of transition and also solutions for the potential barriers to a successful transition.

KEY WORDS: Children; adolescents; adult care; transition; chronic disease.

Before the last quarter of the 20th century, most chronic pediatric diseases resulted in early mortality, and thus patients did not require health care as adults. As a result of improved technology and new treatments for chronic pediatric disorders such as cystic fibrosis, congenital heart diseases, and cystinosis, more children and adolescents are surviving into adulthood. The prevalence of children with a chronic illness varies, but the overall rate ranges between 10% and 20%.

As defined by Ingersoll, adolescence is a "period of personal development during which a young person must establish a personal sense of individual identity and feelings of self worth which include an alteration of his or her body image, adaptation to more mature intellectual abilities, adjustments to society's demands for behavioral maturity, internalising a personal value system and preparing for adult roles." "Adolescence" is thus a developmental phase of significant positive change and maturation. Because of the rapid emotional, social, and psychological changes occurring during adolescence, together with pubertal changes in growth and strength, a number of problems may become apparent that may earlier have been masked (1).

Besides all these problems, a chronically ill adolescent has to fight the disease itself. Renal disease is a bundle of complicated issues: the disease itself, treatments, side effects, and other complications. It is a burden that the adolescent is well aware of. It is also a burden that the young person will probably have to carry throughout adult life and thus will, in time, need the help of nephrologists who treat adults rather than nephrologists who treat children (2).

Although the transition of an adolescent with renal disease into an adult unit is very important, this transition is not discussed as it deserves and is not managed well by the pediatrician and the internist (3). The first simple rule for a successful transition is to remember that "transition" is a multipurpose stepwise process that addresses the psychological, social, and educational needs of adolescents. It is defined as "the purposeful, planned movement of adolescent and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems."

The major differences between pediatric and adult units are these (4,5):

• The pediatrics unit is family oriented, with a multidisciplinary team and psychosocial support. The unit manages fewer patients, and developmental aspects (especially growth) are considered. Genetic disorders are well known by the pediatrician, and the pediatrician usually gives information about the disease to the parents.
  
• The adult unit is focused on individuals, and often has less team support. There is also lack of experience with rare pediatric conditions such as cystinosis and cys-tic fibrosis in the adult unit. Internists make therapy decisions with the adult patient during one-to-one sessions.
  

A young adult has much to achieve before transfer to the adult unit. The first and the most important step is to understand the disease condition and to be able to describe it thoroughly to others. Adolescents should also be able to make decisions for themselves about treatment, while knowing about medications and their effects, clinic arrangements in the adult unit and the consultants responsible for their care, and the procedures for making and keeping appointments. Another important competency that should be considered is whether the adolescent has become a mature individual who can handle personal issues such as transport arrangements for appointments and maintenance of dietary restrictions and other advice related to the disease condition. The patient should also have sufficient knowledge about sexual health and the use of alcohol and drugs through discussions with the consultant (4).

	A FOUR-STEP TRANSITION PROCESS

TOP ABSTRACT A FOUR-STEP TRANSITION PROCESS POSSIBLE BARRIERS TO TRANSITION CONCLUSIONS REFERENCES

 
The timing of the transfer depends on physical and psychological factors and the developmental readiness of the adolescent, but preparation should begin on the day of diagnosis, with the provision to the patient of detailed information about the process.

At the start, an adolescent is seen together with his or her parents, so that all can become more comfortable with the eventual one-to-one appointments. The transition message can start being established at the age of 12 – 14, through personal dialogues such as "You may prefer to visit your doctor alone within two to three years." Posters in the waiting room can also help to promote understanding about individual visits and confidentiality rights.

In the second step, the young adult takes an active role during the visits, and the parents become complementary. Both parties should be informed about individual visits, adult-oriented care, and confidentiality rights. The adolescent should be encouraged to offer opinions before the parents do.

Around the age of 13 – 16, the young adult should be ready to choose the person who accompanies him or her during a visit. If the adolescent prefers to be seen alone, then the visit should accommodate that preference. During this third step, the adolescent should completely be aware of his or her preferences, but parents should still accompany the young person during the part of the visit that encompasses decision-making.

The last step comes when the young adult is alone during the visit and feels comfortable even without the parents being present. Now is a good time to ask questions about the future, for example: "What are you planning after you finish school?" The answer will possibly be "I don't know," but establishing a concept of the future is important, because the rate of unemployment among adult survivors of pediatric dialysis and transplantation is rather high.

	POSSIBLE BARRIERS TO TRANSITION

TOP ABSTRACT A FOUR-STEP TRANSITION PROCESS POSSIBLE BARRIERS TO TRANSITION CONCLUSIONS REFERENCES

 
Unfortunately, the four-step plan outlined here doesn't work as easily as it reads (4–6). Among numerous barriers to a successful transition, the most important ones are these:

• Lack of coordination between the pediatric and adult units
  
• Problems related to parents, resistance of families
  
• Resistance of the patient
  
• Lack of planning
  
• Lack of institutional support
  
• Lack of adult nephrologists
  

Our experiences with patients show that they may sometimes refuse to leave pediatric care, accusing us of not wanting them anymore. With the help of a transition period rather than an abrupt switch to an adult unit, these patients eventually better understood the objectives of the process. After the transition, they leave our unit as happy, independent, self-sufficient, and in-control adults. We were both very happy, and slightly sad, to see these birds fly from the nest.

Different approaches can be taken to the transition process: either a direct transfer from a pediatric to an adult clinic, or a progression through several transition outpatient clinics. The second choice is more preferable, because it allows the young adult to first visit a young adult clinic before moving to an extremely different environment, the adult clinic.

	CONCLUSIONS

TOP ABSTRACT A FOUR-STEP TRANSITION PROCESS POSSIBLE BARRIERS TO TRANSITION CONCLUSIONS REFERENCES

 
Transition to adult care is very important for young people with a chronic illness. Transition should begin as early as possible after diagnosis, depending on the developmental readiness of the adolescent. Transition should be coordinated process that includes a pediatrician, an adult nephrologist, and the active participation of staff in the adult clinic. A successful transition will greatly help with the compliance of the patient in future management, especially in a dialysis and transplantation clinic.

	REFERENCES

TOP ABSTRACT A FOUR-STEP TRANSITION PROCESS POSSIBLE BARRIERS TO TRANSITION CONCLUSIONS REFERENCES

 

1. Ingersoll GM. Adolescence. 2nd ed. Englewood Cliffs, NJ: Prentice–Hall; 1989.
2. Bell L. Adolescents with renal disease in an adult world: meeting the challenge of transition of care. Nephrol Dial Transplant 2007; 22:988 -91.[Free Full Text]
3. Cameron JS. The continued care of children with renal disease into adult life. Pediatr Nephrol 2001;16 : 680-5.[Medline]
4. Watson AR. Problems and pitfalls of transition from paediatric to adult renal care. Pediatr Nephrol 2005;20 : 113-17.[Medline]
5. Turkel S, Pao M. Late consequences of chronic pediatric illness. Psychiatr Clin North Am 2007;30 : 819-35.[Medline]
6. Icard PF, Hower SJ, Kuchenreuther AR, Hooper SR, Gipson DS. The transition from childhood to adulthood with ESRD: educational and social challenges. Clin Nephrol 2008;69 : 1-7.[Medline]

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