Transition to adult care for youth with special health care needs

Question 1

What percentage of youth in N America have a chronic condition that impacts their health?

Answer 1

15%

Question 2

What are the concerns identified by adult HCP about patients transferred from pediatric health care?

Answer 2

1. Lack of adherence to proposed treatment plans
2. Deficiencies in knowledge about the condition
3. Limited self care

Question 3

What is the mandate of pediatric care?

Answer 3

family focused, relies on developmentally appropriate care with significant parental involvement in decision-making and prescribes care within a multidisciplinary team.

Question 4

What is the mandate of adult care?

Answer 4

patient focused and investigational, requiring autonomous, independent consumer skills without many interdisciplinary resources

Question 5

What are some non-medical issues addressed by transition care?

Answer 5

1. Effects on reproductive system and consequences related to underlying condition and treatment
2. STI
3. Contraceptive options

Question 6

What are the health care goals for adolescents?

Answer 6

1. adolescent involvement in management of the condition;
2. adolescent and family understanding of the condition;
3. understanding of personal potential for activity, education, recreation and vocation;
4. completion of adolescent developmental tasks; and
5. the attainment of self-esteem and self-confidence

Question 7

What is transition?

Answer 7

purposeful, planned movement of adolescents with chronic medical conditions from child-centered to adult-oriented health care

Question 8

What are the On-Trac general areas?

Answer 8

1. evolving self-esteem and identity;
2. fostering personal autonomy and independence;
3. continued development in the sexual area;
4. achieving psychosocial stability;
5. continued educational, vocational and future financial planning; and
6. health and healthy lifestyle-promoting practices, including healthy active living.

Question 9

What are additional strategies for transition of care?

Answer 9

1. See teens without parents for part of the appointment to give an opportunity to learn how to present a history, ask and answer questions, and advocate for themselves.
2. Provide books, newsletters and magazines that deal with youth issues and youth living with health conditions.
3. Peer-support meetings in person, via newsletter or through the Internet can connect teens. Parent and sibling support groups are also important.
4. Family or teen education days allow teens to meet each other, get information and talk about transition and the adult system;

5, A formal acknowledgement of ‘graduation’, such as a certificate from the paediatric facility can mark transfer as a rite of passage.

6. Give a transition letter explaining the location of the new facility, staff and what to expect

Question 10

What are the CPS recommendations re: general principles?

Answer 10

1. Paediatricians should be aware that transition is an ongoing process that may begin as early as the time of diagnosis and ends sometime after transfer.
2. Appropriate resources and educational materials should be provided for youth throughout the process of transition.

Question 11

What are the CPS recommendations re: individual and family issues?

Answer 11

1. Transition planning must be youth-focused within the context of the family.
2. Appropriate attention and supports should be provided for family members.
3. Transition should occur at the youth’s pace.

Question 12

What are the CPS recommendations re: multidisciplinary teams and community resources?

Answer 12

1. Transition planning and preparation should be integrated into existing specialty clinical settings.
2. Teams must provide developmentally appropriate care, including a stepwise plan of increasing responsibility for self-care. The family physician should be an integral part of the treatment team. If the adolescent does not have a family physician, the team should facilitate a referral as soon as possible.
3. Teens should be given information about their condition and available resources, including clinics providing sexual health screening for young adults.
4. Skills training in communication and negotiation should be provided to enhance navigation in the adult care system.
5. The provision of transition services may include individual counseling; psychoeducational groups; posters and checklists for staff, patients and parents; joint transition clinics and Web-based tools