Care of adolescents with chronic conditions

Question 1

What is the prevalence of chronic health conditions or special health care conditions in youth in North America?

Answer 1

14.8-18%

Question 2

What is interdependence?

Answer 2

Recognizing and distinguishing from each other situations in which one needs to rely on others and situations in which one needs to rely on oneself

Question 3

What factors make separation and independence more difficult for adolescents with chronic conditions and their parents?

Answer 3

1. Need for treatment
2. Parental overprotection
3. More youthful physical appearance
4. Limited physical freedom

Question 4

What does the AAP recommend re: independence?

Answer 4

Children with disabilities, regardless of the cause, should be encouraged to develop the highest level of independence based on a realistic and objective evaluation of their abilities and limitations

Question 5

What factors make it difficult for adolescents with chronic illnesses to maintain friends?

Answer 5

1. Hospitalization
2. Frequent appointments
3. Restriction - inherent to the condition and those imposed by parents and others
4. Teasing for being different

Question 6

What school and work problems are present in youth with chronic health conditions?

Answer 6

1. Absenteeism
2. Problems with vocational planning
3. Problems with economic support
4. Problems with physical activity

Question 7

What is the unemployment rate in adults with disabilities?

Answer 7

50-75% compared to 5% in the general population

Question 8

What should physicians do regarding concerns re: physical appearance?

Answer 8

Anticipate issues and address them early. Address concerns with delayed growth and pubertal development. Consider professional advice about hair, clothing, and makeup.

Question 9

What should physicians do re: sexual health?

Answer 9

Provide appropriate counselling and screen for sexual health concerns. Explain any specific fertility, pregnancy and sexual health concerns related to their condition.

Question 10

What are the goals of providing health care to youths with chronic health conditions?

Answer 10

1. optimal medical control
2. adolescent involvement in management of the health condition
3. adolescent and family understanding of the health condition
4. acknowledgement of personal potential for activity, education, recreation, and functioning
5. completion of adolescent developmental tasks
6. the attainment of self-esteem and self-confidence
7. the acknowledgement of personal potential for a vocation or career

Question 11

What are the benefits of educating adolescents about their disease?

Answer 11

1. learn how to avoid situations that exacerbate their condition
2. learn how to minimize the severity of an exacerbation
3. learn self-care skills to minimize the daily effects of their illness

Question 12

What are recommendations regarding transition to adult care?

Answer 12

1. Pediatricians should be flexible and take developmental age into consideration
2. Ensure that the transition is continuous, comprehensive and coordinated both to minimize disability and promote appropriate use of health care services
3. Discussions about transition should start between age 10-12y

Question 13

What should pediatricians recommend to parents?

Answer 13

1. Strike a balance between parental supervision and increased control of care by adolescent
2. Help recognize and accept safe forms of self-expression because adolescents often achieve autonomy by engaging in behaviors that parents may perceive as dangerous

Question 14

What should physicians recommend regarding school?

Answer 14

1. Help teachers understand the health condition
2. Facilitate integration into the school program
3. Help parents have realistic academic expectations

Question 15

What should physicians assess related to pain control?

Answer 15

Must assess issues as pain may be underestimated and not treated appropriately. Especially true for SCA, JIA, and neuromuscular conditions.

Question 16

What are the recommendations regarding hospital based care?

Answer 16

Should be adolescent friendly and support developmental issues

Question 17

What other recommendations are present for physicians?

Answer 17

1. Must be knowledgeable about legal regulations and aspects of consent and confidentiality in their province
2. Physicians must be informed about organizations that can provide support to adolescents and their family
3. Facilitate access to needed services in the community
4. Foster broader community responsibility for the chronically ill
5. Be community educators and advocates