Engaging Patients and Caregivers in Shared Decision-making in Juvenile Psoriatic Arthritis

Key Takeaways

• In pediatric care, it is very important to direct questions to the patient—even when the parent is present. Engaging pediatric patients in this way is empowering, and they take more ownership of their care.
• Determine a patient’s therapeutic goals early in shared decision-making to help in choosing a therapy that will address concerns that are important to them.
• Route of administration and frequency of dosing schedule are key differences to discuss with patients regarding therapy options for treating juvenile psoriatic arthritis.

This commentary summarizes key takeaways from the recent webcast titled, “Giving Patients a Voice: Enhancing Patient-Centered Care in Psoriatic Arthritis.”

Discussing Therapeutic Options With Patients and Caregivers
We are very fortunate today to have multiple therapeutic options for juvenile psoriatic arthritis (PsA) to offer patients and caregivers. About a decade ago, we didn’t have many great options. Engagement of both patients and parents in therapeutic decision-making is key. For younger patients, I primarily direct questions to the parents, but for the older children, it is important to direct questions primarily to the patient. Obviously, the parent’s opinions are important, but I urge them to chime in after the patient. Sometimes parents inadvertently dominate the conversation, and the patient’s opinions aren't heard. I think this is especially important for teens, because if they don’t understand why they are taking the medicine or aren’t on board with starting the medicine, they can make it very difficult at home for the parent to give the medication. Patients who haven’t been engaged or who aren’t fully in agreement with their therapy plan may stop their medications once they start college or move out of the house. Self-discontinuation of medication is not an ideal occurrence, especially when it is the patient’s first prolonged time away from home.

Several therapeutic choices are approved by the FDA for juvenile PsA, and these include tumor necrosis factor (TNF) inhibitors (if ≥4 joints are affected; etanercept, adalimumab, golimumab), ustekinumab, secukinumab, and tofacitinib. An important aspect of therapeutic decision-making, especially with the pediatric population, is getting a sense for how well the patient will handle injections or infusions. The available treatments vary in route and frequency of administration, so this is a key part of the discussions. Usually, just by asking their preferences, you will learn what is most important to them. Ask: “Are you willing to do injections or infusions, or would you prefer oral therapy? Would you prefer a medication that is given by mouth every day, an injection every week, or an injection that is every few weeks?” This strategy allows me to narrow down the options for the final decision. TNF inhibitor medications are given at varying intervals, ranging from weekly to every 8 weeks, depending on the drug, ustekinumab is given every 12 weeks, secukinumab is given every 4 weeks, and tofacitinib is taken by mouth twice daily. Some injections are more painful than others. Some children have a really difficult time swallowing pills. These differences, which may seem subtle to healthcare professionals, often matter quite a bit to our young patients. We don’t know their preferences—which are sometimes surprising—unless we ask.

I also like to ask my patients which aspect of their disease is bothering them the most. When considering the drugs that are available to treat juvenile PsA, some seem to work better on the skin than others, but those maybe aren’t as good for the joints, and vice versa. For example, ustekinumab is a great medicine for psoriasis. We have some children with a high body surface area involved, and often the skin is tremendously improved with the first shot of ustekinumab. Our clinical experience has been, however, that it is not the most potent drug for arthritis. So, if a patient is bothered by their skin and wants the less frequent dosing regimen of ustekinumab, we need to at least discuss that a second medicine may need to be added to adequately control joint symptoms. As of early 2022, secukinumab—which is a great drug for psoriatic skin involvement but also a fairly helpful drug for joints—is approved for juvenile PsA. Once you get past the loading doses, secukinumab requires only 1 injection every 4 weeks, which also is a nice option for children who don’t want frequently dosed medications but are willing to take injections.

If you have a child or a teenager who refuses to take injections at home but will come in for infusions, then that is helpful to know up front. We also have several options that allow for SC administration at home but have differing dosing schedules. When considering these, some patients really like to have a medication that is administered at the same time and on the same day every single week, whereas others are willing to take an injection at home but prefer to have the fewest number of injections possible. For the latter set of patients, one of the less frequent dosing regimens would be optimal. We also are fortunate to have options that are administered orally, such as tofacitinib, so healthcare professionals should ask if the child is able to take pills, will swallow a liquid, or would prefer another route of administration. Although oral administration seems easier for young children, sometimes the twice-daily dosing that is required for tofacitinib is more difficult for families than weekly or biweekly injections. Remembering to administer medications frequently can be challenging, and some children can put up a lot of resistance to oral medications.

Resources for Shared Decision-making
Some terrific resources are available online, but most are geared toward adults with PsA, not children. In addition, there obviously are some issues with sharing existing resources with pediatric patients when they include information about medication options that aren’t approved or available for them. There is a real need for the development of pediatric-specific resources.

Healthcare professionals interested in sharing existing resources with patients and caregivers can consider reviewing those from the National Psoriasis Foundation; the Spondylitis Association of America, which has some nice-teenage specific materials; or the Arthritis Foundation. 

Your Thoughts?
What are your thoughts and questions on the use of novel therapies in the management of juvenile PsA? Please answer the polling question and join the conversation by posting a comment in the discussion section below.