Looking Ahead
Looking Ahead
Between the ages of 18 and 21 years old, you will transition from your pediatrician and OI Team to the adult health care setting.
At that time, there are a number of things you, your family, and your health care team can do to help make this change go smoothly.
In this module, you will read and see more about:
I. Transitioning to Adult Health Care
Growing out of the pediatric health care system: Time to transition!
Transition is a term used to describe the change from paediatric health care to adult health care. This usually happens around the time of your 18th birthday, or when you are leaving secondary school. As you become a young adult, you will outgrow the expertise of a children’s hospital or your doctor. At this time, you will need to find a health care provider who can care for your unique needs as an adult. This is especially important if you have a chronic condition like OI, because you will need ongoing treatment or monitoring throughout your adult life.
Your OI Team may include your doctor, surgeon, nurse, physiotherapist, occupational therapist, social worker, nutritionist, child life, or psychologist. Each of them began talking to you about ‘transition’ during your early teenage years. You will soon be completely responsible for your health care. Your OI team wants to teach you how to successfully manage your care, so you can move on.
Some young people with OI worry about leaving their OI Team. Others are excited and look forward to the change. Both reactions are normal. Whichever way you feel, being well prepared and knowing what to expect from the adult health care system can help make your move a smooth one. At the end of this module, you can take a quiz to find out if you are ready to transition to adult health care!
Differences Between Paediatric and Adult Health Centres
- There are a few differences between paediatric and adult health centres.
Becoming Autonomous
As you get older, while it’s important to develop a sense of independence, even if you still need some support, cultivating autonomy is even more important. Autonomy means having control over your own life and making decisions for yourself, while independence means doing everything on your own. We understand that complete independence may not be possible, but you can still achieve autonomy.
It’s helpful to learn more about your medical condition. This will allow you to explain your health needs to new doctors and nurses.
Recognizing when you need medical help, organizing your medications or treatments, arranging medical appointments, and managing any changes to your schedule are all skills that can help you feel more confident and in control of your health.
Making the transition easier
- How important and confident are you transfer to adult care?
- What you already know about your health and how to use health care?
- What medicines are you taking?
- Which skills do you want to you most want to work on?
- Tool for Exploring Decision Making Supports
Complete this decision making tool from Got Transition® to see which decisions you can make on your own, which ones you need support, and which one need to be decided for you!
- OI Transfer Summary Tool
The OI Transfer Summary tool is a portable tool to help improve the transition experience for adolescents and young adults living with OI. The tool covers the following topics: insurance information, psychosocial needs, activities of daily living, transportation, family history, immunization, major surgeries and hospitalizations, pain management, radiographies, medical equipment and follow-up needs. Download and print the tool below (available in English and French). Bring it to your next appointment to fill it out with your healthcare team. 🔗 https://argerietsimicalis.org/wp-content/uploads/2023/07/OI-Transfer-Summary-Tool_ENG.pdf
- Your Health Passport
Another great way to make things easier is to create your own “health passport”.
You can use our template here: 🔗 Fillable PDF document
- All you have to do is download the file and fill it out. You can then save it on your computer, phone or electronic device.
- Then you can print it, fold the paper according to the dashed lines, and keep it in your wallet or near your phone.
This will help you develop your own wallet-sized card that provides your personal medical information. Ask one of your nurses or doctors to help you with the details. Your health passport can be used when you go to a new doctor or if you have to visit an emergency room.
- OIFE Passport: Travel and Support
The Osteogenesis Imperfecta Federation of Europe (OIFE) Passport is like your travel buddy in 22 languages. It tells people you have OI and what to do in emergencies. It also covers X-rays, surgeries, and finding OI organizations worldwide. Online, you can even find it in Latvian, Hungarian, and Ukrainian. Download the pdf on the OIFE website and stay connected during your travels!
Three-Sentence Health Summary
Before you are ready to transfer to an adult health care centre, you should be able to summarize your health history in three to four sentences. By being able to summarize your history quickly, your new doctor will know that you understand your health. The doctor will also know that you can focus on what is important. Your new doctor will most likely still ask you some questions after you give your summary. This doesn’t mean that you have missed out on important information. Instead, it means that you have given enough information so that your new doctor knows what to ask.
- Your health summary should include:
- How long you have been treated for your OI
- Type of OI you have
- Medications you have taken in the past, and are currently taking
- Any past medication reactions or reasons for stopping medications
- Number and location of your fractures and/or rods
- Any past surgeries
- Any complications related to your OI
- Other medical concerns
- Examples
- A practical guide to create yours:
Sentence 1 | Sentence 2 | Sentence 3 |
My age, diagnosis and brief medical history… | My treatment plan… | My question/concern to talk about during this visit… |
Hi, my name is George. I am 21 years old and have OI type III. I have noticed that I cannot always hear clearly what my friends are saying to me, and I am having to ask them to repeat themselves many times. | I am not really sure what to do, but I know that adults with OI are at increased risk for hearing loss. | I want to know what can be done to assess my hearing health and if we need to start any treatments. |
Write out a sample of your three-sentence health summary for yourself. You can change this any time, of course.
II. Tips for Transitioning
Here are some tips to make it easier for you to move to an adult health center.
Early Teens (12 to 14 years)
- Learn to describe the type of OI you have.
- Learn about your medications and treatments.
- Put your appointment dates in your calendar.
- Begin to ask questions at appointments.
- Take on responsibilities at home including chores and helping out with other family activities.
- Be informed about your body, puberty, and sexual health. You can find out more through books, pamphlets, your parents, and your health care provider.
- Learn how smoking, vaping, alcohol, and drugs can affect your health.
- Start your clinic visit without your parent or guardian in the room. This will help you to get used to talking on your own with doctors and nurses. Invite your parent in for the rest of the visit. (🔗 Social Support – talking to doctors)
Mid-Teens (15 to 17 years)
- Start booking your appointment dates and continue to keep track in your calendar.
- Find out about support groups, including online groups, and OI associations that can provide you with peer support. One useful association is the Canadian Osteogenesis Imperfecta Society (COIS/SCOI) and the OI Foundation (OIF).
- Talk to a health care professional about your sexual and reproductive health, and how it is affected by your medical condition. Ask for resources about dating.
- Continue to learn about treatments for OI; both past and new ones and any medications you may take. Discuss future goals such as planning your post-secondary education and your career.
- Meet with your health care provider alone for part of your clinic visits. Your parents can join in for the discussion of the treatment plan.
- With the help of your OI Team, start looking for specialists (orthopedist, endocrinologist, or rheumatologist) who can provide your medical care when you become an adult.
Early Adulthood (18 to 21 years)
- Book your own medical appointments. Keep track of the doctors and other health care providers that you need to see. You should know your doctor’s name, specialty, telephone number, and location.
- Make sure you know your family doctor and when you should be seeing them. If you are not comfortable with the family doctor you have, try to find one who you like and trust!
- Once you know who your new doctor or health care team will be, figure out the details. These include where the clinic or office is located and how you are going to get to appointments. Also find out what to do if you have a fracture before your first appointment. And how to access emergency care.
- Continue to talk to your health care professional about your sexual and reproductive health and how it is affected by your medical condition.
- Share any other health concerns with the health care professional
- Start looking into employment or educational options and health care benefits.
III. Maintaining Your Treatment Program
Now that you have completed all of the Modules, it is a good time to review your S.M.A.R.T goals.
Identifying the Successes
On a sheet of paper or 🔗 using our template, list your S.M.A.R.T goals. Evaluate whether you have reached these goals. List the strategies that have helped you reach these goals.
Remember that everyone is different. Each person has different goals and strategies that work best for them.
Identifying and Overcoming Barriers to Success
You may find it helpful to identify the goals and strategies that you had difficulty with or that did not progress the way you wanted them to. Think of some areas that you had difficulty with and would like to work on. Completing the TRA, the Tool for Exploring Decision Making Supports, the OI Transfer Summary Tool, the Health Passport, and the OIFE Passport may help you identify an area you would like to work on.
Can you name two different skills that you would like to work on?
- There are many reasons why setbacks can occur:
- Learning some of the management skills may be difficult. They may require more time and practice.
- You may forget to practice the skills
- You may think that some of the skills are too hard to do.
- A major event may happen, like a fracture or the illness of a family member. This can interrupt the learning of new skills.
- It may take too long to notice any improvement from using a new skill.
| Here is an example…
□ Barrier: I don’t have time to relax. o Strategy: I tell myself it’s worthwhile to spend a few minutes each day practicing this skill. Write down the biggest barrier you expect to face.□ Barrier: ________________ Now write how to face this barrier. o Strategy: ________________ |
IV. OI in Adulthood
Clinical Manifestations of OI in Adulthood
Several clinical manifestations were identified and included: hearing loss, cardiac diseases, pregnancy complications, cerebrovascular manifestations, musculoskeletal manifestations, respiratory manifestations, vision impairment, and other clinical manifestations.
Use this 🔗 Symptoms Tracker to register your own symptoms.
V. Moving On: Education and Working
Getting ready for university or college
At the end of high school, some students know exactly what they want to do with their lives, and others do not. There are also those who know what they want to do, but just do not know where to begin. There are many choices for you to consider. Start early! High school is a good time for you to be thinking ahead. The sooner you start looking into your options, the more time you have to decide what you are interested in.
There are many ways to test if you might like a career option. You can find summer jobs in the domains that interest you, do volunteer work, or attend career fairs.
Preparing for post-secondary education
Explore your options. Focus on the universities, colleges, or programs that best match your interests and needs.
Access supports. In university or college, you will have a wide range of programs and courses to choose from. Some programs require pre-requisites. Speak with your school guidance counselor to find out any requirements and how to apply. Some universities and colleges also hold information sessions at local high schools and can answer your questions that way.
If necessary, find out about each university or college’s policy regarding special consideration for admission for students with disabilities and access to student services. This would include health conditions like OI.
Transitioning from high school to post-secondary education
Adapting to a new environment: in most post-secondary schools, class sizes will be larger or smaller than what you were used to in high school. Contact with your instructors may also be different, especially if the class is very large. You may be able to communicate with instructors through email, scheduled appointments, or by telephone. Policies and procedures are also different so take some time to learn them.
Changing expectations: when you transition from high school to a post-secondary school, you will be expected to be more independent. Although help will be available, completing homework or studying for tests will be left up to you. It can be helpful to develop good habits such as writing down due dates on a calendar to keep track of your assignments.
Registering with the office for students with disabilities
Students with health conditions are entitled by Federal law to have reasonable changes made to classroom settings, test/exam formats, as well as other learning aids that will make learning easier. These are called accommodations. They are set up through the office for students with disabilities on your campus.
Here are a few tips:
- Register with the office for students with disabilities on your campus as early as possible. Setting up accommodations can take time.
- Register even if your condition is not bothering you right now. They will be able to help if you need a note taker in the future, or if you have to miss classes because of illness.
- You will require documentation from your doctor to register. Check with your school to find out what information you will need.
- Remember that all of your medical and accommodation information will be kept strictly confidential.
Options for accommodations and support
Accommodations will be set up according to your individual needs. Your contact person at the office for students with disabilities may speak with you about:
- Accessibility: entries should be accessible for walkers or wheelchairs, elevators for higher floors, accessible washrooms, residences with wheelchair accessible rooms
- Course load: What is manageable based on your energy level
- Classroom accommodations: Note takers, a reserved seat close by the entrance, setting up a desk if you are in a wheelchair
- Test/exam accommodations: Identifying a need for extra time, breaks, special voice-activated computers, or writing aids
- Planning ahead to deal with symptoms: This may include flexibility in assignment or exam schedules during symptoms (e.g. pain, fatigue or fracture)
- Funding options for disability-related educational costs
- Here are some key steps to consider when planning for university:
- Registering with the Office for Students with Disabilities:
- Contact the university’s disability services office as soon as possible. Registering will ensure you receive necessary accommodations and support tailored to your needs, such as accessible accommodations, exam modifications, and assistance with course materials.
- Finding a Healthcare Provider:
- Locate a healthcare provider near your university who has experience with OI or rare bone disorders. They can provide ongoing care, monitor your condition, and assist in emergencies.
- Creating an Emergency Plan:
- Develop an emergency plan in case of fractures or health crises. This plan should include:
- Contact information for your healthcare provider and emergency services.
- Instructions on how to handle fractures, including the use of any splints or emergency kits you may have.
- Communication with roommates, friends, or university staff about your condition and how they can assist in emergencies.
- Develop an emergency plan in case of fractures or health crises. This plan should include:
- Accessibility Considerations:
- Ensure your classes, dormitory, and campus facilities are accessible.
- Contact the university’s accessibility office to confirm accessibility features, such as wheelchair ramps, elevators, accessible washrooms, and seating arrangements in classrooms.
- Reviewing and Adapting Your Management Plan:
- Regularly evaluate your symptom management plan and make adjustments as needed. If certain strategies aren’t effective, discuss alternatives with your healthcare team. Changes may be necessary as you adapt to university life and new challenges arise.
- Communicating with Your Healthcare Team:
- Keep open communication with your healthcare team. Discuss how you’re managing your symptoms and any challenges you face. They can provide guidance, recommend adjustments to your plan, and support your overall health and well-being.
- Staying Connected and Informed:
- Stay informed about resources available on campus, such as support groups, counseling services, and academic accommodations. Joining groups or networks for students with disabilities can provide valuable support and camaraderie.
By proactively addressing these aspects of university life, you can create a supportive environment that allows you to thrive academically and socially while managing your OI effectively.
Volunteer work
Volunteering is one of the most valuable life experiences you can acquire. Not only does it give you work experience, but it can help you build your resume. It also gives you the opportunity to learn new skills and to find out what you would like to do and what you would not like to do for a living. By volunteering, you are helping people in need and promoting what you believe in.
You can find volunteering opportunities at your school, at your local community center, or online.
Workplace
Many adults with OI have very successful professional careers. However, if you are looking for a job, there are two main things to consider. First, try to find a position that speaks to your abilities and limitations. Avoid applying for jobs that require you to move around a lot and to lift heavy objects. Second, make sure that the workplace is accessible to your needs. If it is not, you must discuss with the potential employer what can be done to make it accessible.
You might not want to tell your employer about your OI for fear that they might fire you, not schedule you for as many hours, or tell your coworkers. However, it is important that you talk to your employer about your OI since you may require special needs or miss work for medical reasons. There are many ways that you and your employer can work together to help you while at work.
Your employer might ask you the following questions, so be ready to answer them:
- Is your OI contagious?
- How is OI treated?
- Do your medications affect your ability to concentrate?
- What signs or symptoms show that you need medical help?
- What, if any, are your emergency instructions?
- Do you have any activity restrictions?
- Will you need any accommodations (changes or help) to participate in work?
- Will you need to miss work very often?
