As youth with ongoing health care needs move from a pediatric setting to an adult setting for treatment, naturally, their relationship with the health care system will change. Children and youth whose parents may have previously managed the bulk of their care are now navigating the system independently, and with full responsibility.
The exact point when a youth moves out of the pediatric system into the adult system is called the transfer of care. But did you know there is a whole process in place to help prepare for that moment?
The time leading up to transfer, and following it, is the transition of care (sometimes just called transition). Transition of care is a process that involves the patient, their family and all of their care providers and it can start as soon as the child or youth becomes a pediatric patient. The process should prepare, educate and practice the youth so they are ready to move into the adult health care system when the time comes.
Let’s talk about transition of care
What does good transition into adult care look like?
Jared: A good transition into adult care involves agency on behalf of the patient, patience from the health care provider(s), and a shared goal of a continued high level of patient treatment and health. A successful transition results in the patient having confidence in both themselves and their health care provider, and leads to continued treatment and optimal health.
Amanda: A good transition would be when the youth is prepped well in advance throughout their care and treatment to be able to have a successful transfer to their adult health care provider where they feel safe and confident.
Jackie: Sometimes we think about transition as the few months before we transfer a patient over to adult care, but transition starts when the patient first engages with pediatric care and is supported by individualized planning, a coordinated transfer of care, and secure attachment to adult services (CAPHC Community of Practice, 2016). Remember, attending a first appointment in adult care does not demonstrate ‘secure attachment’. Transition includes patients confidently managing their health care in adult services. For youth with intellectual differences who need greater support with decision-making, a good transition helps to ensure they are able to participate as fully as possible in their care and that their caregivers are supported to have the resources they need to navigate the adult health care system.
What benefit does good transition into adult care give the patient? What benefit does it give the health system?
Jared: For the patient, a good transition can lead to improved or maintained level of health. Additionally, a good transition can improve (or maintain) one’s quality of life as they navigate a vastly different system from what they are used to. For the health system, a good transition results in a patient who has agency and who manages their condition diligently. By producing patients who are agents in their care, the health system can avoid lapses in treatment and therefore reduces the risk for symptom exacerbation.
Amanda: A good transition into adult health care gives the patient consistent care for their health conditions, it also relieves stresses and worries about their health care knowing that they have adult providers that care about them. A good transition benefits the health system by reducing the number of emergency rooms visit that may occur from youth that have fallen out of care.
Jackie: Building confidence and capacity in patients and in their families makes for better health outcomes. When youth feel prepared for the transition and supported after their transfer, they have a much different experience in the move to adult care. The improved health outcomes can also result in decreased cost to health system. Certainly, our partners in adult care really appreciate when youth are well set up with the skills and resources they need when they land on their doorstep!
What is the risk of not supporting good transition into adult health care?
Jared: If the transition process is not appropriately supported, the patient may lose faith in the health care system, and they may experience a drop in quality of life. This may culminate in poor health outcomes that negatively impact the patient’s life and add strain on the health system.
Amanda: Youth being lost in their care. When youth have a bad transfer to adult health care it may turn them away from seeking any type of care for their health conditions. If health care providers don’t support their patients in their transition, the preparation done on the child side at the IWK and the support needed on the adult side, it could really be detrimental to the care of the patient.
Jackie: We know that poor transition can affect health outcomes, including decreased clinic attendance, increased hospital admission rates, decreased adherence to medication regimes and illness specific tasks. What we don’t always recognize is the connections that have been found between substandard transitions and decreased employment, increased public assistance, and increased depression and anxiety. Our health, and health care, affect so many areas of our lives. When transition is not seen as a priority, it affects all aspects of patient’s lives and our social safety net.
What can health care providers be doing to help prepare their patients for the transition to adult health care?
Jared: At this time, it would be important for health care providers to ensure their patients are aware that all the regular resources that were originally available to them are still in place; although the delivery and manner in which these resources are accessed might vary compared to pre-COVID-19.
Amanda: Usually the small things create the most worries. I think the biggest thing that health care providers can do to help their patients is to create space to answer the small questions like “Where do I go?” or “Who can come with me?” or “What do I bring?”
Jackie: Begin with the end in mind! Talk about transition and transfer from the beginning of your time together and if your patient bring up transition, take the opportunity to ask them what questions or concerns they have. Repeat, repeat, repeat again! Ensure that patients have a solid understanding of their health history and can communicate it to you. Help them to build the skills to make health care decisions and to navigate the health system.
What can patients and their families be doing to help prepare for the transition to adult health care?
Jared: Parents should be encouraging their youth to be maintaining agency, and they should help to try and work through the access of resources with their youth. Patients should be continuing to prepare for transition by ensuring they understand their treatment regimen, their condition, and that they compile this information in a single, easily accessible place (e.g. mobile phone).
Amanda: As patients feel they are ready, they should slowly take on one component to manage their health care. Whether that be making an appointment or remembering to take their medications on their own. Also working on self-management and independence skills in other areas of life can help when it comes time for them to take on their healthcare.
Jackie: It can happen in small steps; life is full of transitions and lots of opportunity for learning. Letting your child lead the way to the clinic and register independently, preparing a question for a team member, or even getting your child to order for themselves in a restaurant is building the skills to make a decision and articulate it to someone else. Those skills build to the bigger skills, like knowing your health history, meeting with your health care provider alone, and remembering to take your medication. If transition is overwhelming or building those skills is stalled by stress or worry, reaching out to the psycho-social supports in the health centre or in the community may help.
What are some differences patients need to prepare for entering the adult system that they might not be used to managing?
Jared: Patients will need to understand that as patients in the adult system, they will be required for scheduling and attending appointments, filling prescriptions, and for providing their health care provider with accurate information regarding their condition. Patients should get used to adding events to the calendar in their phone (at the time of booking!) and they should also use a journal or notes on their phone to keep track of their symptoms between appointments. Patients should review their tracked symptom information before their appointments so they can relay important information.
Amanda: Keeping track of their own appointments; there are more people to be seen on different days in the adult system and that was a change for myself.
Jackie: I think making health care decisions on your own, navigating care and learning to advocate for yourself can be challenging. On top of leaving home or changes in work and school, remembering to book that yearly follow-up appointment or ask for a prescription renewal in advance can easily get missed.
What was your experience like in transitioning to adult health care? What was good and what was missing?
Jared: After my diagnosis (at age 16), I was immediately put in the adult health care system and for this reason I never experienced a true transition. However, in my experience the thing I felt I was lacking was understanding of my condition and the treatments available. I did not prepare well for my first few appointments (preparing questions to ask, tracking my symptoms, etc.) and this caused me to feel like I wasn’t getting the most from my health care provider. I was too shy to ask questions at first, and while this has changed now, I wish I would have had the confidence to ask questions sooner.
Amanda: My experience transitioning to adult health care was good. I had great health care providers that helped me through the changes. I also had knowledge of the transition and transfer to adult health care that I would go through. Preparing well in advance helped me a lot.
How does COVID-19 impact transition?
In this time of the pandemic, what do you want patients to know about continuing to receive service when they needed?
Jared: I think it is important for patients to remember that all the resources that would normally be available, are still available, but they be delivered or accessed in a different manner.
Amanda: Health care providers are still there to help you! If you would normally have an appointment at this time, make sure you don’t skip it. You can probably have it online if your doctor is not seeing all of their patients in person.
Jackie: I think self-advocacy skills are important now. Patients need to know that if they are experiencing changes in their health to contact their health care provider. They can reach out to their adult specialist or their primary care provider to get help. Not many of us are our ‘best selves’ right now, but we are doing the best we can and the same is true for patients. When a pandemic changes everything, it’s normal that your positive health care behaviours would be negatively affected, that you might lose some of the skills you had gained. Helping patients to build self-compassion to understand this normal change, recognizing the values that are important to them, and helping them to notice when they are succeeding, even just a little, can make a difference.
Is it important to continue working towards transition even during the pandemic? Why or why not?
Jared: Absolutely! This time may actually provide individuals with greater time to hone their ‘transition skills.’ Though the pandemic is changing things, once things begin returning towards ‘normal’ health care will resume at a high speed. Patients don’t want to be caught off guard and must ensure they are proactive.
Amanda: Absolutely. Being prepared is what has helped me so much in my transition. If I took a four to five month break, I would have been behind. Working on self-management skills can happen at home and will help during transition.
Jackie: Yes! Even more so. Emerging adulthood is already a challenge for building capacity and self-management, now throw in a pandemic and it becomes even more important to spend time building skills, remembering that the brain under stress does not learn as easily. My biggest concern is for youth who are marginalized in the health care system. We know that the social determinants of health play an important role in the transition to adult care and those who are most at risk related to the social determinants are also most at risk for poor health outcomes during transition. And these are likely the same youth who are most affected by COVID-19. All of these confounding variables potentially make the risk during transition and transfer far greater for these youth. Being thoughtful and collaborative about the transition of patients who are adversely affected by the social determinants of health may be more critical now and in the years ahead.
What additional differences can patients working towards transition expect during the pandemic?
Jared: Expect consultations may be over Zoom or Skype, expect to complete patient questionnaires for your health care provider beforehand.
Amanda: Everyone is adjusting to a new normal, so your health care providers may not know exactly what your transition will look like. Know that everyone is doing their best to help you work towards and through transition, don’t panic if things aren’t perfect!
Jackie: We have heard from our colleagues and patients in adult care, that navigating health care and other resources is less intuitive during the pandemic. They have urged us to ensure patients are well-equipped to navigate adult care and to have the resources they need to succeed. With longer wait times and more difficulty accessing care, patients may be at a higher risk of being lost to follow-up and we have a joint responsibility to ensure secure attachment in adult care. Perhaps more now than ‘pre-pandemic,’ we need to help patients come up with a plan for what will happen once they transfer to adult care, who they will see, how to contact them, how long they can expect to wait for an appointment, how to ensure your referral has been received, what to do and where to go in an emergency, access to their health records and who to ask for help if they need.
What special tactics can health care providers use during this time to help patients prepare for transition/transfer to adult health care?
Jared: Appointment reminders could be particularly important, and it could be very valuable to remind patients to prepare for their appointment (either on their own or by completing patient questionnaires). Ensure that patients know they are still going to receive the high level of health care they are used to!
Amanda: There are tools available to health care providers like the three-sentence summary outline or the readiness checklist. Health care providers can give these to their patients and their families to work on at home because they may not be seeing them as much in person.
Jackie: Amanda has mentioned the Readiness Checklist and the Three Sentence Health Summary. These tools and others are available on the IWK Health website. And thanks to a new ‘COVID-19 way of thinking,’ we have made the Readiness Checklist into a fillable form available in English and French. This form allows patients to fill in the form themselves and send it to providers prior to their appointment. Adding one more thing to a virtual care appointment may feel a bit daunting right now, but transition and self-management can still be integral to your practice. A patient may appreciate even more the opportunity to speak privately with providers over Zoom!
The Transition of Care Committee is looking for youth who are interested in transition, looking for ways to build their own skills and who reflect the diversity of patient experiences from across the Maritimes. If you know of a youth who might be interested in the Transition of Care Committee, please let us know! You can contact Jackie Pidduck at 902-470-3772 or IWKTransition@iwk.nshealth.ca. More information about the committee can be found at www.iwk.nshealth.ca/transition-of-care-committee.