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Season: 2003

Submitted By: Doreen Fofonoff and Bill Hryhor

Many children with congenital heart disease (CHD) are now living well into adulthood as a result of improvements in diagnosis and treatment,. Eventually, the young adult will have to move from the pediatric to the adult health care system. Youth and their parents have often been reluctant to move to the adult system because it would mean giving up the all that is familiar to them in the pediatric setting. Even pediatric health care providers have been reluctant to "let go" of these young adults. As well, adult health-care providers have not always been ready or, in many instances, willing to take on these patients because of a lack of knowledge of CHD. However, remaining in the pediatric setting may prevent these young adults from becoming responsible for their health care as well as deprive them of appropriate care by those familiar with adult medical issues.

Transition (meaning change) to adult care should be a process and not an event. It should involve the youth, family and health care providers. It must be planned and take into account not only age but also level of maturity and type and severity of the congenital heart condition. Transitioning to adult health care can be a frightening and sometimes overwhelming process for youth and their parents. In the past, transition often occurred during a crisis, when the young adult was forced by their age or life plans to move to another facility. Today, many centres now have a formal approach to transition the young adult to the adult setting.

The Pacific Adult Congenital Heart (PACH) Clinic at St. Paul`s Hospital and the Cardiac program at British Columbia`s Children`s Hospital (BCCH) in Vancouver identified a need for a formal approach to transition youth and their parents to the adult setting. With support from the Youth Health Program at BC Children`s Hospital, a multi-disciplinary cardiac transition team was formed. The team members came from both the pediatric and adult clinics and worked closely together. A variety of educational tools, information exchanges and eventually a Transition Clinic evolved from these meetings.

Early on several problems were identified, including the need for more youth education about their CHD, a general reluctance towards the transfer of care and a need to promote independence. Strategies to enhance the youth`s understanding of their health condition and promote independent behaviours and self-advocacy have been incorporated as a regular component of outpatient visits at BC Children`s Hospital. Transition issues are now discussed starting at an early age and reinforced on subsequent visits.

Youth ready for transition to the adult setting are identified by the pediatric team and they and their parents are invited to attend a 3 hour Transition Clinic at St. Paul`s Hospital. The Clinic is held twice a year. A team of adult and pediatric health care providers (physicians, nurses, psychologist, and social worker) and PACH Clinic patients participate in the session. The clinic includes an overview of the adult congenital heart clinic, what is different between pediatric and adult care, the transition process, a tour of the adult clinic and diagnostic areas and two break-out sessions. The session for parents focuses on how to relinquish their role as the primary care provider and how to foster their youth`s independence. The youth session focuses on promoting self-advocacy and health care issues relevant to youth (i.e. body image, choosing careers). The pediatric team also provides the youth with health passports and wallet cards detailing their congenital heart condition.

Evaluations of this clinic, including feedback from the youth, their parent and the health care professionals, have been very positive. Involvement in the transition process has highlighted the need for multidisciplinary support for this complex, unique and growing population