At one time or another we all find ourselves learning and adapting to a new stage in life. This is a process called transition, and for some of us it can be a journey that spans many years. For families living with hemophilia, many parts of the journey are shared with the comprehensive care team.
Three main stages of development – childhood to teenage years
Stage 1
Birth – age 8
Learning about hemophilia and how it is treated and managed
Stage 2
Ages 9 – 13
Adapting to rapid growth and developing key skills
Stage 3
Ages 14 – 19
Learning new roles and responsibilities for adult independence
But what happens next?
When a child is on their way to becoming an adult, the Canadian Hemophilia Society refers to this time as the
transition to adult care.
It is the coordinated transfer of a patient from child health services to adult health services.
Whenever there is a change, there can be a lot of questions. Let’s have look at some of the most common ones to help you and your child on this journey.
How does care change with the transition to an adult hemophilia program?
Pediatric
hemophilia
programs
hemophilia
programs
•
Focus is on the child and parents
•
Treatment and care is adapted to each child’s development
•
Care team works with the family as a whole
Adult
hemophilia
programs
hemophilia
programs
•
Focus is on adult health needs and medical issues
•
Care team works directly with the person with hemophilia
At the appropriate time, the pediatric care team will guide the family through the transition to an adult hemophilia program.
When does the transition to adulthood and adult care begin?
Factors that influence the timing of the transition to adulthood include:
Knowledge
and skills
and skills
Physical
fitness
fitness
Home
treatment
treatment
Communication
with the care
team
with the care
team
Ability to
make decisions
make decisions
Stress
management
management
Necessity to
transfer to
another program,
clinic, or hospital
transfer to
another program,
clinic, or hospital
What are some transitional challenges?
During adolescence, a young person with hemophilia must deal with all the typical changes associated with this phase in life:
Forming significant relationships with peers and/or romantic partners
Choosing a profession
Moving out of the home
In addition, the person transitioning to adult care needs to accept increasing and ultimately full responsibility for managing their condition.
Responsibilities include:
Self‑injection
Attending
appointments
appointments
Maintaining adherence to
treatment
treatment
Ordering
supplies
supplies
Managing
treatment away
from home
treatment away
from home
Possibly
navigating the
insurance
system for the
first time
navigating the
insurance
system for the
first time
Unfortunately, adherence to treatment is generally low during the transition to adult care.†
Why is treatment adherence so important?
Lack of adherence can lead to:
•
Recurrent joint bleeds
•
Reduced quality of life
•
Chronic pain
Potential reasons for nonadherence during the transition from adolescence to adulthood
The WFH has identified the following
Barriers to treatment adherence commonly found in adolescents:
Educational
issues
issues
Practical issues
Emotional and
developmental
issues
developmental
issues
Social issues
Social issues
•
Lack of family and peer support
•
Reduced parental supervision
•
Lack of trust with new medical team
•
Interference with lifestyle (e.g., travel, sport)
•
Lack of disclosure
Emotional and developmental issues
•
Rebellion against regimented treatment
•
Denial
•
Poor decision-making
•
Developmentally immature
•
Anxiety/fear
•
Developmental delay or disability resulting from intracranial hemorrhage
Practical issues
•
Inconvenience/scheduling barriers
•
Lack of time
•
Insurance issues
•
Poor organizational skills/remembering to take treatment
•
Reluctance to self-administer/poor venous access
Educational issues
•
Lack of knowledge about:
-
The benefits of treatment
-
The consequences of nonadherence
Keys to a successful transition
A successful transition program should be responsive to the needs of the patient, the parents, and the healthcare providers.
Communication, collaboration, and preparation are the key elements for a successful transition program.
•
Good communication and collaboration should be established between the team, the person who is transitioning to adult care, and their family
-
Members of the adult care team should be skilled in counselling adolescents
•
Early planning, jointly with adolescent patients and parents, allows for a gradual shift in responsibilities
-
Ensures smooth navigation through the complexities and barriers to successful transition and treatment
-
Helps the transitioning person to be ready, able, and comfortable to take full responsibility for their condition and transition to adult care
•
The planning process should involve the person transitioning, their parents (or caregivers), as well as the pediatric and adult care teams
•
Patient education is an important aspect of the transition phase
•
Lack of knowledge about the benefits of treatment and the consequences of not taking treatment can lead to nonadherence
What can a parent do to help the transition?
•
Stay involved in the various aspects of your child’s health and medical care
•
Continue to dialogue at home and show an interest in their appointments
•
Encourage your child to take charge of their health and medical condition
•
Guide your child through all the tasks and responsibilities related to managing their hemophilia
•
Help them develop skills and confidence, and build independent relationships with the members of their care team
•
Assess their knowledge, skills, and progress as they near the time for transition
