Transition To The Adult Side
“Welcome to the Young Adult Clinic, we are looking forward to working with and supporting your child as they adjust to the Adult Health Care System. You are currently the primary contact on the file, but since your child is now 18 and a legal adult, we will be updating this contact with their cell number. We will plan to do all the communicating about their appointments, blood work and health care with them from now on.”
This is when I usually pause on the phone, so the parent has a moment to consider this transition they are experiencing along with their child. I’ve had all types of reactions:
“Hmmm, I don’t think that’s a good idea, my child is not very responsible, I think I should remain the primary contact”
“Ok, that sounds good, but how will I still be kept informed?”
“Wow, this is amazing, it’s time and I’m happy to hear my child will get this transition support”!
My name is Julie Herrington, I am an advanced physiotherapist practitioner and I work in the Young Adult Rheumatic Diseases Clinic at McMaster Children’s Hospital in Hamilton, Ontario. I work with an adult rheumatologist to support young adults aged 18 – 23 that have just left pediatric care and have made the transition to adult care. I have a unique role in our healthcare system, as a recent study in Canada showed one of the largest barriers to effective transition care for young adults older than 18 was the lack of multi-disciplinary support (1). In contrast to many pediatric rheumatology teams who have the support of nurses, physiotherapists, social workers and child life support, adult rheumatologists often work completely independently with no support whatsoever.
Transition can be thought of in three different phases: Preparing to transfer (ages 14 – 17), the time of transfer (age 18) and post transfer (ages 18 - 23) (2). We know young adults are particularly vulnerable during transition and data has shown that up to 50% are lost to follow up (3). This means the young adult has their last pediatric appointment and never makes their next appointment in adult care! Of course, anyone who has a rheumatic disease (juvenile arthritis, lupus) knows their disease doesn’t just stop because you turn 18! Without care, the risk of disease flare increases dramatically and sometimes we find these young adults present in the emergency department or show up in the rheumatology office years later, but with permanent joint damage.
In Canada, a group of pediatric rheumatologists, adult rheumatologists, allied health (physiotherapists, occupational therapists) and researchers from across the country who are all interested in improving transition experiences and systems, have formed the Canadian Rheumatology Association Transition Working Group. This group is determined to discuss, implement and support innovative ideas that improve transition. There has become a need for this group to share ideas, as we see a growing number of young adults with chronic diseases transitioning to an adult health care system that isn’t necessarily prepared to manage them.
At our center, one of these ideas started as an adaptation to the pandemic. The adult rheumatologist switched his Young Adult Clinic to virtual appointments, as many also did across the country. To avoid the awkwardness of me also sitting in on these virtual visits, we decided it might be more efficient if I called the young adult patient the week before to prepare them for their appointment. Initially these phone calls were brief; we confirmed appointment times, confirmed medications and other basic details. Over the past year and a half, we’ve realized the potential in this format of health care delivery and have expanded on what is covered during these phone calls to incorporate the much needed psychological and emotional support, as well as to work on developing better self-management skills.
Some examples of topics or issues we might discuss include:
Content of the Initial Welcome Phone Call
How to contact both myself and the doctor
The importance of letting us know if they can’t make the appointment and how to reschedule
Understanding privacy and that all information discussed with us is confidential even from their parents*
I often play a small game and ask each young adult to tell me their diagnosis (most can do it!)
We review medications, doses and responsibilities of each medication (For example: with Methotrexate regular blood work is necessary, with Plaquenil eyes need to be checked 1x/yr)
Then I ask them what is the main thing they want to talk to the Dr. about? Is there more than one thing? We review how to be ready to ask those questions.
Content example of Subsequent Phone Calls
Post-secondary school- where, what studying, have they thought about connecting with the accessibility office there to disclose their condition and be prepared if accommodations are needed?
Living arrangements – how far will they have to walk to school or work? Could they get a bus pass? Have they thought about good meal planning? Will roommates respect you on days you aren’t feeling your best?
Alcohol, smoking and drugs – many young adults haven’t considered the interactions of their medications with alcohol or drugs and these phone calls provide time and opportunity to make sure this is fully understood
Sexual activity and relationships – these phone calls are the perfect opportunity to discuss these sensitive topics because each young person needs to consider specific issues with their disease or medications they are taking
*All health care professionals must maintain privacy unless someone discloses intention to harm themselves or others.
I consider myself extremely lucky to have this unique opportunity to work with and support Young Adults in the Rheumatology clinic. This is an emerging role across the country and must be looked at as an essential part of the health care system. We recently had a young adult from our center participate in a transition focus group with other youth across the country. She reported back to us that she was shocked that within a group of almost 10 young adults, she was the only one that could say her transition experience was positive and that she had felt well supported. With that feedback in mind, we continue to grow and evolve our own program in Hamilton so that we can share what we have learned with other national sites as they continue to build their own unique programs of support.
Barnabe C, Chomistek K, Luca N, Hazlewood G, Barber CEH, Steiman A, Stringer E. National Priorities for High-quality Rheumatology Transition Care for Youth in Canada. J Rheumatol. 2021 Mar;48(3):426-433. doi: 10.3899/jrheum.200790. Epub 2020 Oct 15. PMID: 33060318.
McDonagh, J.E., Farre, A. Transitional Care in Rheumatology: a Review of the Literature from the Past 5 Years. Curr Rheumatol Rep 21, 57 (2019).
Hazel E, Zhang X, Duffy CM, Campillo S. High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis. Pediatr Rheumatol Online J. 2010 Jan 11;8:2. doi: 10.1186/1546-0096-8-2. PMID: 20148143; PMCID: PMC2820032.