(Transcribed with Permission from Mary Paone, Nurse Clinician with Youth transition services at British Columbia's Children's Hospital.)

Patients with chronic health conditions of any kind experience the same transitions in life as anyone else.  The difference is that there are additional needs and concerns that should be addressed and met by all the concerned caregivers including the family support system.  Unfortunately this does not always happen as smoothly as one might hope.

The following article, written and compiled for Contemporary Pediatrics by consultants Sandy Whitehouse, and Mary C. Paone, outlines the needs and the possible solutions.  In addition, they provide a Transition Checklist, which is divided into Early Stage Transition, Middle Stage Transition and Late Stage Transition, which may assist in following the progression of the youth and ensuring needs are met at every stage.

British Columbia's Children's Hospital also provides a planner called "Your Plan-It", an excellent resource to assist youth in transition.

Other health resources in Canada are:
The Canadian Health Network
Canadian Organization for Rare Diseases (CORD)

Health Resources Specific to Youth in Transition:

Transition Revolution: You can make it happen in Health Care (Transition 99).
Health Care Transitions

Extract from: “Contemporary Pediatrics, A Canadian Journal Dedicated to the Care of Children” Dec. 1998 Pg. 13,15-16

Pediatric resource

"Patients in Transition: Bridging the health care gap from youth to adulthood"

A generation ago, few children with severe chronic illnesses and disabilities survived to adulthood.  Today's technological and medical advances have increased the life span of these youth with more than 90% now reaching the age of  20.  As a result, the focus of health care is undergoing a shift from disease treatment to health promotion and secondary disease prevention.  A new emphasis in health care for youth is on developing their abilities necessary to actively participate in their own care.  Transition planning is a feasible way to accomplish this goal by providing developmentally appropriate care and health promotion throughout adolescence to help prepare the individual for the adult health care system.

Transition By Definition
Youth with chronic health conditions face two simultaneous transitions: a developmental transition (from childhood to adolescence to adulthood) and a situational transition (from pediatric to health care). They may also have a third transition, from relative health to illness, depending on the progression of their illness.

The goal of transition is to provide health care that is uninterrupted, coordinated, developmentally appropriate and psychologically sound prior to and throughout transfer into the adult system.  Success is determined by the continuity and use of appropriate health care services and by maintaining the patients health.  Transition planning and preparation involves providing youth with the knowledge and skills they will need to achieve these ends.

Developmentally Appropriate Care
All youth, whatever their physical, cognitive and/or social circumstances. are confronted with similar developmental tasks in reaching adulthood:

1) the development of self-esteem and a healthy identity

2) emancipation from parental control to autonomous behaviours and some level of independence

3) formation of a sexual identity

4) establishing meaningful social and peer relationships, and

5) seeking suitable education or employment.

While all youth have similar issues, and individual's opportunity and ability to meet their own needs may be significantly altered by health conditions and their relationship with their families and health care providers.

Adolescents with chronic health conditions identify a multitude of health concerns, including: discrimination; limitations on future activities; a sense of dis-empowerment;  school and learning problems, and mental health issues.  They must also deal with the usual issues of youth, such as drug, alcohol, and substance abuse, sexuality, and dissatisfaction with their appearance.

How youth with chronic health conditions fare is determined, in part, by their ability to achieve their developmental milestones while minimizing general health problems.  There is an increasing need to provide health care that integrates health promotion strategies that not only promote longevity but enhance quality of life.

Challenge to providing developmentally appropriate care
Many parents who have been the primary caregivers of youth with chronic health conditions have difficulty in encouraging independence and relinquishing some of the decision-making to their adolescent.  There may be doubts about the adolescent's ability to achieve partial or total independence, and both the youth and the families may require assistance in learning to distinguish which situations the youth can handle him/herself.

The role of the pediatrician
In many situations, all of the medical, social and educational services that support the youth and the family change with the transition to adulthood.  The pediatrician who is familiar with the family situation and the treatment implications of the specific health condition is a vital link in ensuring the patient's needs are met with continuity and coordination of services.  Assisting the youth in choosing a family physician or primary care physician or primary care physician in his/her own community is an important step in this transition.

In providing care that promotes autonomy and self-advocacy, the first step is to relate to the youth as an individual- encouraging the patient to ask questions an acknowledging their capacity for making choices on their own.  focusing conversations on the youth will encourage active involvement in his/her own care.

Since learning occurs largely by emulating someone who is admired, the most significant impetus for maintaining health will come from family members with whom the adolescent spends the majority of his/her time.  The pediatrician can therefore help by promoting positive health behaviors in the parents as well as the youth.

Transition planning involves helping youth and their families recognize that they have some control over and responsibility for their health care relationships.  Often a small gesture, such as handing the youth the prescription or discussing the next appointment with him/her, promotes independence and gradually shifts health care responsibility to the patient.,  Similarly, asking for questions and concerns during regular visits or meeting with the youth alone will encourage independence and self-reliance.

A survey of physically disabled adolescents 1 to 14 years of years found that 57% were unable to describe their disability; of the 50% who were taking medications, none could explain why.  Adolescents who have been 'cared for' since birth may feel that the condition and its care are the responsibility of others. This can make it difficult for them to learn to take ownership of the situation.  Formal re-education regarding their condition helps them advocate for themselves and seek health care when needed.

The heath care system expects young adults to function autonomously and promotes independent health care decisions.  The pediatrician should provide the youth with information about adult services, settings, and adult patient role expectations and give him/her the opportunity to practise adult behaviours related to decision-making, acquiring information and giving consent.  The pediatrician can also prepare the family for the adult system- a mainly problem-oriented, procedural and client-centered system that often fails to encompass the families needs or concerns.  Unless prepared, many familiar may feel excluded and abandoned.   It helps if the pediatrician meets with adult service providers in the community who have experience working with young adults, to discuss efficient protocols for transfer of care (e.g. forwarding records, anticipated routine follow-up care, and mechanisms to ensure continuous care).  The youth would also benefit from a visit with the adult care provider prior to discharge from pediatric care to learn about the new physician's approach to management and ensure the transfer is suitable to both parties.

 Strategies for effective transition planning
A transition framework can be conceptualized that follows normal adolescent development with early, middle and late transitional stages (see checklist on page 16). Placed within the adolescent's time frame, the process should begin around 10 years  of age (grade five or entry into puberty) and proceed until the age of 18 (graduation from high school or transfer from pediatric care).  Transition planning should proceed at the youth's pace according to their physical and cognitive abilities, psychological and emotional stability, family and social supports, and general health stability.

Within this framework, specific developmentally appropriate strategies can be placed in six main content areas: self-advocacy and self-esteem, independent health care behaviours, sexual identity and health, psychosocial supports,   educational and vocation planning, and health and life-style behaviours.

The transition from pediatric to adult care requires that youth, family and health care providers work collaboratively to ensure the best possible health outcome.  The pediatrician who has been involved with the family since early childhood plays an important role in providing information and direction to youth and families on issues affecting health care choices and life-style.  Transition planning can help reduce secondary disability and teach life-long skills fore accessing and making optimal use of available health care resources.

Available on Request.

Consultants: Sandy Whitehouse, MD, FRCPC is Clinical Associate Professor of Pediatrics at British Columbia's Children's Hospital.  Mary C. Paone MSN is Nurse Clinician with Youth transition services at British Columbia's Children's Hospital.



(10-12 years/Grade 5-7)

The youth and family are introduced to the transition process and the youth begins to participate in his/her own care.  Skills are supported and practised at home with the family.

p Educate the youth in describing the chronic health condition. Review with family
p Encourage the youth to ask questions during each office visit

Independent Health care behaviours
p Discuss the medications and treatments youth needs daily, including problems or barriers to compliance.
p Discuss purpose of Medical Alert ID bracelet; how to seek help from others

Sexual Health
p Discuss puberty changes, differences from peers and impact on health condition.
p Discuss where youth and parents can obtain information about sexuality

Psycho-social support
p Provide parents with the opportunity to discuss their feelings about loss of control, concerns about the future and increasing the adolescents independence.
p Talk to youth about social activities, peer involvement and supportive relationships.

Educational and vocational planning
p Talk about youth's responsibilities at home (e.g. chores)
p Discuss restrictions (real or imagined) on youth's educational or recreational activities.

Health and lifestyle
p Question youth about smoking, use of alcohol and street drugs.
p Discuss impact of above behaviours on health condition and general well-being


(13-15 years/Grade 8-10)

The youth and family gain understanding of the transition process and the expectations of the adult system.  The youth practises skills, gathers information and sets goals for participating in his/her care.

p Discuss strategies to access information about condition and treatments (e.g. support groups, Internet, library, condition-specific health associations)

Independent Health care behaviours
p Youth makes next appointment, talks with receptionist and discusses transportation..
p Encourage youth to learn about medication; practise having a prescription refilled
p Have youth discuss when, how and from whom to seek emergency/medical help.

Sexual Health
p Youth brings questions to clarify impact on condition and/or medications
p Provide/encourage opportunity to meet with youth and parents alone to discuss concerns/questions.

Psycho-social support
p Prompt the youth and parent to express positive goals for self and health.
p Encourage the youth to join a club at school, a community or peer support group or to attend camp.

Educational and vocational planning
p Focus discussion on school, favourite subjects, plans for high school, ideas for careers.
p Have youth visit school counselors to talk about career prep courses or volunteering

Health and lifestyle
p Discuss plans for driving; identify any restrictions.
p Discuss issues of body image, concerns re: dieting, exercise weight gain or loss.


(16-18 years/Grades 11-12)

The youth and family prepare to leave the pediatric system with confidence; the youth uses independent behaviours (as able) to move into the adult system

p Discuss choices for adult care (specialists/hospitals/community services).
p Assist in choosing adult care providers (family physicians/specialists)

Independent Health care behaviours
p Youth maintains personal health record book to keep track of medical/dental appointments, health information and history, medications and treatments, health care providers (including names and telephone numbers).
p Youth meets with adult specialist/family physician before discontinuing pediatric care

Sexual Health
p Discuss with the youth genetic risks, sexual capabilities, fertility, sexual vulnerability.

Psycho-social support
p Identify needs for personal assistance in care, issues of living away from family.

Educational and vocational planning
p Discuss employment options and plans for health care benefits.
p If choosing college, discuss medical coverage, transportation, living arrangements, impact on health condition.

Health and lifestyle
p Provide opportunities for youth to discuss feelings of depression or suicidal thoughts.
p Have youth identify person(s) he/she can contact for help or advice.

Contact Information  

British Columbia's Children's Hospital Youth Health program has developed a clinical pathway, youth health day timer and staff resource materials for distribution.  For more information, go to Youth health, which has all the youth health tool and programs,

"Your Plan-it"

-a health care planner especially designed for youth with a chronic health conditions to help them

To obtain copies of this and other materials, and for more information about Transition Planning please contact:

The Family Resource Library
BC Children's Hospital
Vancouver, BC, Canada

604-875-2345 local 5102 or 1-800-331-1533 ext 2


under kids/teens/families

This page was transcribed by Colin Steeksma as a service to children/youth with chronic disorders in transition, and children with X-Linked Hypophosphatemia (XLH).  For information on XLH and other Vitamin D disorders please visit the website.