juvenile arthritis

Got Transition?

One of the perks of my new job is being able to attend meetings geared towards those in pediatrics for improvement. Last week, I was able to attend a meeting on transitioning children to adult care – a subject that gets very little focus here in the US. Studies have been done recently, but most of them are based in the UK or elsewhere abroad. As a country, we have to get a system down.

Many peds patients don’t realize they can’t just keep the same doctor. True, some can if they’re seeing someone in family or internal medicine. However, if you’re seeing a pediatrician, you’ll have to leave that practice by the time you’re 25 (depending on your condition). For a lot of families, this comes as a surprise. The biggest first step is making sure that patients get that information – and that docs can help ease you into that transition.

Often, these changes mean that your insurance could be changing as well, which is an important topic to go over with young adults. The biggest thing of course is encouraging self care and self advocacy. As a provider, you want your patient to feel comfortable with who they’re going to but also to speak up when things aren’t right.

For those without a transition plan in place, there are increased hospitalizations, worsened medicine adherence (I HATE THIS WORD THOUGH), and possible lapses in insurance coverage. Kids need to know how to handle themselves to prevent these issues.

On the other hand, patients with a transition plan in place experience improved quality of life (from knowledge & education they receive), reduced readmissions, and there is often a lower cost involved for MD transition teams. This saves the patients and the overall healthcare system time and money.

So how do we get a good transition plan in place?

For patients, we need to have educational programs in addition to skills programs and support. Staff also needs to receive education, possibly with transition coordinators and joint care clinics to help with this process. The UK has already experimented a bit with joint care/transition clinics, and that’s helped tremendously. There also needs to be enhanced service delivery. We don’t often think of docs and other healthcare providers as having service type jobs, which I think we tend to associate with jobs akin to garbage collecting, etc. However, HCPs provide services for which they are billed. Our satisfaction as customers comes up more than one would think, but not as often as it should. Young adult/joint care clinics will help with this, as will enhanced follow up and phone support. I would also add support via other means of technology – social media, email, chat, etc. My generation hates talking on the phone, so PLEASE make it easier for us to reach out when we need to. I don’t want to have to work myself up to calling someone if I’m already concerned.

The gal who spoke to us was from the Center for Youth & Adults with Conditions of Childhood (CYAC, pronounced kayak). There is all sorts of great information on their website about how they handle the transition process including a workbook. The clinic takes care of people ages 11-22… which is flexible. Their oldest patient is in her 60s, but there just aren’t enough resources for her to get help elsewhere due to location. Damn the rural midwest!

They set up visits at predictable or personal milestones. Did you get your driver’s license? Let’s have a visit! Did you get accepted into a couple of colleges? Let’s have a visit and talk about what accommodations if any you may need, etc. They do a comprehensive assessment with transition plans starting early and care coordination across the board. If you have juvenile arthritis, the clinic would take over your primary care while coordinating with your pediatric rheumatologist. Once you decide on a college, the first step would be to get set up with a rheumy out there. The last step would be to set up a meeting with the new primary care doc. This helps gives the clinic more coordination, but also the patient more time to adjust to some of the other changes while keeping some things stable.

Their team consists of social workers, nurses, family advocates, and of course docs. They also have graduations! In order to graduate from clinic, you have to be engaged with your new primary care doc, have sustainable insurance, either be self-managing or have an assigned decision maker, have an engaged support system, and have any special care requirements met. Now that last piece doesn’t require you to be out of peds completely. If your ped rheumy will continue to see you longer and you’re on board with that, great!

There is a website called Got Transition – a partnership between the Maternal and Child Health Bureau & the National Alliance to Advance Adolescent Health. It’s great and you should definitely check it out! There are resources there for HCPs, which gives you a clue as to how you’ll be tracked and measured. There is also a section for youth and families.

In Washington DC, they’re moving to a new model of handling transition which seems to be going well. You meet with the peds doc, then s/he talks with the adult doc, then you meet with the adult doc. Once the full transition is complete, THEN docs get paid.  Docs weren’t necessarily pleased at the idea, but hey what can you do?

As a part of the transition planning, docs need to be way more engaged in these patients’ lives. They have to find the new docs, give them info on the patients, and see if the docs will take on these cases.

A downside for patients is that they get MORE HOMEWORK. Ugh! But this is meaningful homework 😉 It may start out with you needing to learn the names of your meds to dosages to docs to setting up and attending appts on your own, etc.

One thing that struck a grumpy chord with me was the case studies section. Often, these patients were not sticking to taking their meds in order to fit in better and then having adverse events. It is true that this happens, but instead of placing blame on the patients, I think we need to look at our society as a whole and what we can do to improve how we treat ill people in general.

All in all this was a very informative hour. There need to be some changes made in how this runs I think to get it stable and running in more areas. However, we are SO far behind Europe on transitioning. It’s awful. Something is better than nothing, and changes can be made later on.

Do you find these ideas helpful? If you’re an adult, what would’ve helped you transition to adult care?

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1 Comment

  1. Hey Kristin,

    I saw a pediatric rheumatologist until I was out of college (starting when I was diagnosed at 1). In my city they work with a clinic that specializes in the transition from pediatric to adult and more specifically adults with JRA. My current rheumatologist is great and spends time to call and email all my other specialists. Communication is so important! One of the tricky things was transferring my records because the hospitals were in different networks. I just started my own blog. Check it out! allgrownupwithJRA.blogspot.com

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