- What is health care transition?
- It is the planned move from health services for children to health services for adults.
- Why do we need to transfer young people at all?
There is much research to support why transition to adult health care is important. Here are some links to journal articles that explain some of these reasons. There are many more helpful websites on the Links page of this website.
Transition from pediatric to adult care. Bridging the gaps or passing the buck?
Consensus Statement on Health Care Transitions for Young Adults with Special Health Care Needs
- Are you prepared for the transition?
A planned transition process is vital for the healthy psychological development of the majority of young people. The role of parents and/or caregivers is to assist young people become, as much as possible, happy, healthy, competent adults who can manage their condition as best as they can. This requires careful planning and a gradual transfer from dependence to independence. We are here to assist you and your family to prepare for this by looking at the following aspects of your care.
Please use the Transition Workbooks to help prepare for transition.
Please feel free to discuss these issues or any other concerns with the JaxHATS clinic staff.
- You and your Doctor: As you grow up it is important to increase your independence. This means developing the skills and confidence to talk to your Doctor on your own. We will ask you to start seeing the doctor on your own for part of the consultation. This helps you to understand and manage your condition and to increasingly take more responsibility for self care.
- Medications: Older adolescents have also learned to be responsible for their own medications. Knowing the name of your medications, why you need them, and how much you need to take is a great start. Taking them without a reminder from a parent or guardian is the next step.
- Adolescence and your condition: It is important that you know about your condition and its effect on your growing, changing body. Perhaps there are some questions that you would like to have answered about this.
- When should transition begin and end?
The people in your health care team will usually start talking about your move to adult services when you are in high school, or when you are about 14 years old or close to when you are diagnosed (if you are an older adolescent). Transition is a process that occurs over many years. This allows time for you and your family to plan your future health care with your health team.
Transition ends when you have started seeing the adult health care professionals and have stopped seeing pediatric services. This usually occurs close to when you leave school. Some individuals may need more supports than are typically available in the adult health care system, and thus find it difficult to fully transition. If you feel you or your child/dependent may need additional supports, please talk to our staff.
- What do I need to think about when preparing to move from my pediatric service?
When moving from your pediatric service there are a number of things you need to keep in mind:
- Learn about your condition, including: your medications, warning signs that you need to get some help and how to get help.
- Understand what tests you need to have regularly, why and what the latest results were.
- Become more independent around your health care needs. This includes making your own appointments, having some ‘alone time’ with your doctor, getting your prescriptions filled and maintaining any medical equipment you need.
- Become more comfortable communicating with health care professionals, rather than relying on parents or caregivers to do all the talking. Practice asking your doctor questions and answering the ones they have.
- Find out about how adult services are different to pediatric services. Start to check out the adult services in your area and what they can offer you. This can be done in consultation with your health team.
- Enroll for your own Medicare Card and find out about private health insurance.
- When should I start thinking about adult services that suit me?
It is always good to start thinking about the move early, to give you time to find the right service that suits your needs. This is not something that should be rushed!
Allow at least a couple of years to find the services that suit you. It does take time to find out what services are available in your local area and then pick the best one for you. Discussing this with your doctors is a good starting point.
- What are my options?
- Discuss the service options available to you with your pediatric service. Services can vary throughout the state and do vary between illnesses / conditions.
- How do I find the right service/person for me?
After your first visit to JaxHATS you may feel that JaxHATS is not the right place for you. You do have the right to ‘shop around for a health care provider that meets your needs. The most important thing is to find a provider that has staff that make you feel comfortable and have the necessary expertise to assist you with your illness/condition.
Try asking your doctor for recommendations, or even other young people with similar conditions
- What are the most important things to consider when checking out an adult service?
Here are a few points to keep in mind when searching for the right service:
- Is it easy to get to an appointment at the service? (This will vary depending on whether you drive, catch public transportation and how far away you live).
- What hours do they open? (This may be important if you have to fit your appointments around work or study)
- Can you access the building safely? (Especially important if you use mobility aids)
- Do you ‘connect’ and feel listened to by the staff? (This includes your doctor and clinical staff)
- Has the service had any experience with young people with a similar condition/illness?
- How quickly can you get into see a clinician once you phone up to make an appointment?
- What options do they offer to pay for appointments and how much do they charge?
- What are the differences between child and adult health care services?
There are many differences between child and adult health care settings. One main difference is the amount of independence you will be given. With independence comes the need to learn about your condition, speak up about any concerns you have and seek advice when you need it. As you become an adult you will be learning how to do more things for yourself and therefore not need a parent’s help as often. The adult services will treat you as an adult and will expect that you have some independence and are able to do many things yourself.
Many young people want to know in advance what to expect in the adult service so as to be better prepared. We have tried to list some of the differences for you.
- Why is transition an emerging issue in health care?
Because of continuing improvements in medical technology, the life expectancy of individuals with childhood onset chronic health conditions has improved significantly. For example, while most children born with Cystic Fibrosis in the 1950's died in their infancy, children born today with CF can expect to reach their 40th birthday. Today, more than one-half of all the individuals in the U.S.A. with CF are over the age of 21. Likewise, the life expectancy for individuals with Sickle Cell Disease has improved dramatically. In the 1970's, Sickle Cell Disease was considered a disease of children and adolescents. Today, about 85% of children born with this condition are expected to reach age 21. At least 80% of children born with Spina Bifida are expected to celebrate their 21st birthday.
In recent years, many leading medical organizations on the federal, state, and local level, have begun to address the issue of health care transition directly. In 2001, three leading medical societies - the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians (which represents Internal Medicine) - endorsed a consensus statement on health care transitions for youth and young adults with special health care needs. This statement defines health care transition, discusses why planning for transitions is important now, and identifies crucial first steps to ensuring successful transition to adult-oriented health care.