Module B5 : The adolescent with a chronic condition


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Module B5: The adolescent with a chronic condition

Entry Scenario

The entry scenario addresses a variety of issues and problems associated with the module topic. It may be used at the beginning of the course to stimulate the students to identify their own needs and interests. The results may be utilized by the individual to assess own learning process, or be integrated with class objectives.

A 14 year-old boy who is diabetic since the age of 8 is brought to consultation by his parents. Both parents, especially the mother, are worried because the boy has been acting out for the past six months and not following his treatment regime. Two weeks ago, he was admitted to the emergency room for keto-acidosis, the second such event in the six months period. His endocrinologist has clearly stated that the boy must adhere to the prescribed therapy or search for another doctor.

General Goals for Learners
by completing the module the participant will be able to :

Demonstrate an understanding of the adolescent experience of chronic condition.
Recognize the interrelated impacts of chronic conditions and adolescent biopsychosocial development.
Understand quality of life and ethical issues affecting a patient with a chronic disease.
Demonstrate proficiency in developing and implementing a management plan with an adolescent affected by a chronic condition, with the parents, and with the professional network. Communicate effectively with all persons involved.

Goal 1 : Demonstrate an understanding of the adolescent experience of chronic condition.

Knowledge

Training Objectives Key topics to be covered	Educational Methodology	Activities, Issues, and Questions	Pertinent resources
A. Identify the 5 most prevalent chronic conditions in one’s particular clinical work and compare this information with national data	Reading	If participants do not have access to national or local data, have them list conditions from their own experiences.	Ref 1, 2
B. Know the definitions used by WHO for chronic diseases			Website 1
C. Consider alternative approaches to defining the concept of chronic condition	Class discussion	Discuss the non-categorical approach as described by Perrin and Stein & Jessop	Ref 3, 4, 5
D. Identify characteristics of chronic conditions and describe how they have an impact on the adolescent’s life. prognosis & course intensity of care- visibility acceptability & cultural value functional impairment/level	Interactive lecture Small groups discussion followed by plenary	Groups reflect on what might be the similar needs of a 15 year-old diabetic girl, a 15 year-old boy with mild hemiparesis, and a 13 year old girl with a cystic fibrosis. Determine the impact on the adolescent of therapeutic regimens, of the functional level, of the visibility of the condition, of predictability of the course of disease and the prognosis.

Skills

Training Objectives Key topics to be covered	Educational Methodology	Activities, Issues, and Questions	Pertinent resources
E. Elicit the feelings and experiences of an adolescent with a chronic condition	Patient volunteer or role play	Using the example adolescents in the case studies above, explore the meaning given to the condition by the adolescent and by his/her environment, as a basis for delivering patient-centred care. Utilize “trigger questions” in appendix 1.	Appendix 1

Goal 2 : Recognize the interrelated impacts of chronic conditions and adolescent biopsychosocial development

Skills

Training Objectives
Key topics to be covered

Educational Methodology

Activities, Issues, and Questions

Pertinent resources

A. Identify the impact of chronic conditions and its treatment on the fulfilment of the biopsychosocial and development tasks including

biological: growth & puberty
psychological: identity formation, and development of sexuality, body image, and abstract thinking
social: autonomy development, family & peer relationships, educational achievements

Readings

Mini lecture followed by small group work

Role play (if time permits)

For objectives A and B: Discuss, or role play, the trigger questions in appendix 1.

Example 1:
Compare a girl with spina bifida experiencing precocious puberty at age 9, and a girl with CF with delayed puberty at age 15. Consider the different developmental tasks of adolescence and describe how the condition might affect these developmental trajectories.

Example 2:
Compare three boys seen in a diabetes clinic for a yearly check-up. One is in early adolescence, one is in middle adolescence, and one is in late adolescence. Work through issues of adherence, the role of the parent in treatment, and autonomy.

Example 3:
A 15-year-old boy, Tanner G2 P3, diagnosed with diabetes at age 4 is admitted to an emergency room with keto-acidosis; his mother complains that he binges on sugar every time he participates in social events.

Ref 6, 7, 8

Appendix 1

B. Identify the impact of developmental changes on the course and management of chronic illness, including:

treatment regimen & adherence
non-compliance, and its determinants
changing role of parents
transition to appropriate autonomy in treatment and adult health care

Group (or small groups) discussion

Develop more examples that illustrate the interrelated impacts of chronic conditions and adolescent development. Describe situations that interfere with usual life (family, school, professional, etc.) Describe factors that can influence (both positively and negatively) treatment adherence or compliance.

Ref 9 - 12

Goal 3 : Understand quality of life (QOL) and ethical issues affecting a patient with a chronic disease

Knowledge

Training Objectives
Key topics to be covered

Educational Methodology

Activities, Issues, and Questions

Pertinent resources

A. Consider aspects of outcome other than disease prognosis

Quality of life such as client satisfaction, vocational/ educational possibilities, financial, and emotional independence
Handicap/impairment/disability as a social construct

Mini lecture and
Class discussion

Present summary of literature if participants have not read reference articles. Trainer presents examples from own materials that exemplify the experiences of an adolescent with a chronic disease.
Class discuss how to assess QOL, what are the “ingredients” of QOL, and what is the health provider’s role in improving QOL for an adolescent with a chronic condition.
Discuss the consequences of the disabling process itself and the lack opportunity associated with being disabled.

Use trigger questions in appendix 1 to elicit information about the adolescent’s quality of life and future.

Discuss how health professionals are socialized around illness management and how this might affect their work with patients, parents and teams.

Discuss the influence of culture on how chronic conditions are perceived.

Ref 13, 14, 15

Appendix 1

Skills

Training Objectives
Key topics to be covered

Educational Methodology

Activities, Issues, and Questions

Pertinent resources

B. Identify outcomes important to patient, family, and health professional

C. Incorporate ethical considerations into the decision-making process

consent and confidentiality
genetic screening
end of life decisions

Patient volunteer, role play, or patient encounter at local hospital or clinic

Elucidate the adolescent’s perception of his physical health, psychological state, level of independence, social relationships and personal beliefs in relation to his goals, expectations, values, standards, and concerns. What issues should be included in discussion with the family? Whose perceptions of outcomes are most important? How can the quality of life be measured?

Ref 13

Websites 2,3

Goal 4 : Demonstrate proficiency in developing and implementing a management plan with an adolescent affected by a chronic condition, with the parents, and with the professional network. Communicate effectively with all persons involved.

Skills

Training Objectives Key topics to be covered	Educational Methodology	Activities, Issues, and Questions	Pertinent resources
A. Develop and negotiate a management plan with the adolescent and his/her parents needs and priorities assessment, including the perspective and concerns of all parties requisites of optimal medical care traditional as well as complementary and alternative care (CAM) options resources of information and assistance, including community, school, and self-help	Group work and role play	Negotiate a plan for a 17 year-old male with cystic fibrosis who is a smoker and does not want to do his physiotherapy because it takes too long and he prefers being with his friends. Determine the adolescent’s understanding of his situation, his needs, wants and capabilities, using a developmental perspective. Determine parents’ perspective and concerns. Reach agreement in balancing medical care with the above perspectives and possibilities.	Ref 17/Ch.20 Ref 2, 4, 10
B. Tailor guidance and primary care to the particular circumstances of chronic conditions standard health promotion disease specific anticipatory guidance, including issues of sexuality	Case study role play Medical consultation/patient encounter at local facility	Case 1: An 18 year-old girl with epilepsy wants contraception, but is afraid of the side effects of most of the contraceptive methods, about which she has heard from friends, on television, and on the internet. Case 2: A 13 year-old boy with asthma who is leaving for a scout camp does not want to take all his medication with him. The mother accompanied him to the clinic, and appears upset about letting her child go to the camp. Case 3: A 16 year-old boy with severe asthma reports improvement in his condition when he inhales cannabis. He also admits to smoking half a pack of cigarettes par day. Role play an intake interview for the above cases. What agenda should the health provider have? Refer to trigger questions in annex 1.	Ref 6, 11, 14, 16, 17 Appendix 1
C. Manage complex situations requiring the intervention of many professionals elements of team leadership identification of case requirements	role play group discussion	Case 1: A 15 year-old CF patient with decreasing lung function and the onset of diabetes is about to be expelled from school because of excessive absenteeism. Create a role play which includes the professional’s first encounter with the teenager and parent, a discussion with the school principal who is uncooperative, and a meeting with different medical specialists to negotiate and implement a treatment plan. Case 2: 16 year-old girl with well-controlled epilepsy under treatment with valproic acid and carbamazepine, is 8 weeks pregnant. Organize a case conference with all the specialists that should be involved. Decide who should be the case manager, which options can be offered, and who should talk to the girl.
D. Effectively communicate with the adolescent patient and parents during perceived or actual life threatening situations, and in communicating bad news.	Role play	How would one communicate a new diagnosis of diabetes mellitus to a 12 year-old boy, or tell a 17 year-old girl with cystic fibrosis that tests indicate declining lung function? How would one tell a15 year-old with Down syndrome that he has leukaemia?	Ref 18, 19

Knowledge

Training Objectives
Key topics to be covered

Educational Methodology

Activities, Issues, and Questions

Pertinent resources

E. Identify the essential elements of a planned, coordinated transition from child-centred care to adult health care setting

key people involved in transition
transfer of contents
facilitating factors and barriers

Readings

Local patient encounter, medical consultation case study

Articles from Blum, Viner, Bowes

Case study: An 18 year old boy with cystic fibrosis has been transferred to adult care but has not attended the clinics for 6 months. He continues to visit the emergency ward for antibiotics and inhalants.

Ref 9, 20, 21

Attitudes

Training Objectives Key topics to be covered	Educational Methodology	Activities, Issues, and Questions	Pertinent resources
F. Identify personal attitudes that may interfere with a health provider’s decision making regarding a patient with a chronic condition	Small group work	Discuss the feelings and reactions a health provider might experience during the process of transitioning a patient, using negative as well as positive examples of patient-doctor relationships. Consider one’s own attitudes regarding the competency of physicians who provide care to adults.

References

Newacheck P, Halfon N. Prevalence and impact of disabling chronic conditions in childhood. Am J Public Health 1998;88(4):610-7.
Suris JC. Global trends of young people with chronic and disabling conditions J Adolesc Health 1995; 17-22
Perrin EC, Newacheck P, Pless IB et al. Issues involved in the definition and classification of chronic health conditions. Pediatrics 1993; 91 (4): 787-793. (www.pediatrics.org )
Stein, REK, Baumann, L, Westbrook L, Coupey SM, Ireys HT. Framework for identifying children who have chronic conditions: The case for a new definition. J Paedtr 1993;122: 342-7
Stein RE, Jessop DJ. A noncategorical approach to chronic childhood illness. Public Health Rep 1983; 97(4):354-62.
Rosen DS. Pubertal growth and sexual maturation for adolescents with chronic illness or disability. Pediatrician 1991; 18: 105-120.
Cepeda ML, Allen FH, Cepeda NJ, Yang YM. Physical growth, sexual maturation, body image and sickle cell disease. J Natl Med Assoc 2000, 92:10-4.
Suris JC, Michaud PA, Viner R. The Adolescent with a chronic condition. Part I: developmental issues. Arch Dis child (in press).
Blum R, Britto M, Sawyer SM, Siegel DM. Transitions to adult health care for adolescents and young adults with chronic conditions. Position paper of the Society for Adolescent Medicine. J Adolesc Health 2003; 33:309-11. (http://www.adolescenthealth.org/html/transition_science.pdf).
Blum RW et al. A Consensus Statement on Health Care Transitions for Young Adults with Special Health Care Needs. Pediatrics 2002, 110(2):1304-6. (http://aappolicy.aappublications.or/cgi/reprint/pediatrics;110/6/S1/1304.pdf)
Adolescent Medicine Committee, Canadian Paediatric Society. Care of the chronically ill adolescent. Can J Pediatr 1994: 58-60 (www.cps.org)
Kyngäs H, Kroll T, Duffy M. Compliance in Adolescents with chronic diseases: A review. J Adolesc Health 2000; 26: 379-388.
Lindstrom B, Kohler L. Youth, disability and quality of life. Pediatrician 1991;18(2):121-8.
American Academy of Pediatrics, Committee on Children With Disabilities. General Principles in the Care of Children and Adolescents with Genetic Disorders and Other Chronic Health Conditions. Pediatrics 1997;99(4):643-644.
Gledhill J, Rangel L, Garralda E. Surviving chronic physical illness: psychosocial outcome in adult life. Arch Dis Child 2000;83(2):104-10.
Neinstein L. Contraception in women with special medical needs. Compr Ther 1998;24(5):229-50.
Sawyer S, Tully M, Colin A. Reproductive and sexual health in males with cystic fibrosis: a case for health professional education and training. J Adolesc Health 2001;28(1):36-40.
Krauss-Mars AH, Lachman P. Breaking bad news to parents with disabled children—a cross –cultural study. Child Care Health Dev. 1994 Mar-Apr; 20(2):101-13.
Sharp MC, Strauss RP, Lorch SC. Communicating medical bad news: parents’ experiences and preferences. J Pediatr. 1992 Oct; 121(4):539-46.
Viner R. Transition from paediatric to adult care. Bridging the gaps or passing the buck? Arch Dis Child 1999;81:271-75
Bowes G, Sinnema G, Suris JC, Buhlmann U. Transition health services for youth with disabilities: a global perspective. J Adolesc Health. 1995 Jul;17(1):23-31

Websites

http://www.who.int

Tasks for teachers:

Identify national data on chronic conditions in adolescence
Identify adolescent stories (books, diaries, videos, personal testimony ) of chronic illness in national context
Identify examples community resources for adolescents with a chronic condition

Appendix 1:Trigger questions

The following trigger questions are given as examples of how to appropriately elicit important information from the adolescent.

Goal 1, Objective E:

Can you explain your condition in your own words?
Do you know other people who have the same condition?
Who knows that you suffer from this illness?
What do other people think of you having this illness (peers, teachers, neighbours etc.)?
Why do you think that you have this condition?
What does this illness hinder you from doing (be very specific!) now, and later in your life?
How much time does the management of the disease take you and your parents? (Consider everyday tasks, routine medical care and unforeseen examinations. Possibly use a diary approach).

Goal 2, Objective A: (Note: questions from HEEADSSS also apply, and will give an interesting profile of psychosocial development.)

How do you like your body? What would you like to be different?
Have your menses started already?
Who does what in your treatment (diary approach)? What is your role, what is the one of your parents?
How do you approach your prescriptions and care routines?
Do you know why you should do certain care routines?
How does the health care schedule fit into your daily life?
Estimate which percentage of the prescribed treatment you did in the last 2 weeks?

Goal 3, Objective A

What do you enjoy in life?
Tell me about your friends. How many friends do you have? What is the age and gender of your friends?
What do you do with your friends outside of school?
What can you do on your own? What would you like to do on your own?
Tell me about your future plans. Can you be specific about how you plan to achieve them?
What would help you to make your life more enjoyable?

Goal 4, Objective B

Tell me why you need treatment?
What information have you found on your disease in books, the Internet, on the TV, and from experts?
Question to parents: what are you afraid of happening if you give the responsibility of the care to your adolescent?