As a pediatric rheumatologist, I treat children and adolescents with autoimmune and inflammatory conditions. Part of this management requires the coordination of infusion therapy for a population that is extremely procedure and needle averse. This is a challenge when these IV therapies are the difference between a normal childhood and one riddled with disabilities such as growth abnormalities, a permanent limp, or even organ failure. From the physician perspective, the choice of infusion therapy for a patient often comes down to the efficacy versus the adverse effects profile of the medication, including the safety of administration.
Interestingly, in addition to being a rheumatologist, I am a rheumatoid arthritis patient myself (ironically diagnosed after becoming a pediatric rheumatologist). I am intimately familiar with the world of injections, peripheral IV’s, multiple doctor’s appointments, and infusion visits. However, the viewpoint of infusion therapy can look different when you’re on the other side of the exam table. This perspective, along with my role as a physician, highlights special considerations for pediatric infusion patients.
Both pediatric and adult patients in need of infusion therapy face the same access barriers, including payor policies and eligibility criteria. However, pediatric patients have the added challenge of finding ambulatory infusion centers and infusion providers that are accustomed to caring for children. Here are some things to consider when providing infusion care to children with rheumatologic conditions from the patient/parent to the infusion center perspective.
#1. Children are not tiny adults. Developmentally, their ability to understand the need for frequent infusion therapy will not be received or processed in the same logical manner as their parent or provider. Much of this stems from the fear of pain and the fear of the unknown. For most children, the best outcomes occur when they can anticipate what to expect, so paint this picture for them beforehand. This is especially helpful for school-aged kids. When it comes to pediatric rheumatology infusions, part of the process of caring for children relies heavily on the parents and caregivers, so be sure to involve them as well. A common misconception is that parents can be difficult, but the truth is, they just want to be as prepared as the infusion center to anticipate any challenges.
From the infusion center perspective, make sure to communicate the importance of preparation with parents/caregivers in advance. Have a checklist of items for parents to review prior to the appointment so they can talk to their child about details of the infusion day. For example, will they get picked up early from school, or will they have to skip school that day? What do they want to wear that day? Any special breakfast/lunch requests? The more the child feels they’re in control, the better. What work/tests will they miss that day? How long will the infusion be? Will there be a movie to watch? Pro tip– instead of saying “the infusion will take 3 hours,” you can say “it will be all of Moana plus 1 episode of your favorite show on Netflix.”
Make sure to have the child pack a special “infusion day” bag or backpack. Fill it with the child’s favorite things like their iPad, favorite book/Kindle, stuffy, blanket/pillow, and snacks. Have the parent or caregiver communicate that they’ll be next to the child for support the whole time. Simply discussing these types of details helps ease much of the anxiety associated with infusion therapy, making for a better experience for all involved.
On the day of the infusion, have the infusion center staff describe the order of events that will take place during the actual appointment. Explain the steps of obtaining access and starting a PIV. Let the child know that the poke of the needle will be slightly uncomfortable and that they will feel pressure. It is important not to sugar coat the pain aspect of PIV placement, but also convey that you’re confident the child will be able to handle it. And most importantly, remember to emphasize that the goal of infusion day is to help them get bigger, stronger, and healthier, so they can get back to doing what they love.
#2. Some say offense is better than defense. Prior to starting an infusion, make sure to review and consider the child’s underlying diagnosis and any other conditions. For example, in a child with systemic or localized scleroderma involving their skin, there may be specific sites to avoid when looking for PIV placement as this can increase risk of ulceration, fibrosis, or infection.
In children with lupus nephritis or ANCA vasculitis involving the kidneys, make sure to monitor for any fluid restrictions. Also consider conditions that can be associated with the disease, such as hypertension. Is the total volume of fluid from the infusion still within the fluid restriction for the day? Can the medication being infused cause hypertension in a child that already has hypertension, or does it need to be run at a slower rate? In situations like these, it may be best to utilize infusion software to have certain flags or notes in the child’s chart so everyone involved can be aware.
Similarly, prepare for any adverse reactions or emergencies. Various pediatric rheumatology medications include abatacept, belimumab, cyclophosphamide, immunoglobulin (IVIg), infliximab, methylprednisolone, pamidronate disodium, rituximab, and tocilizumab. Make sure to have pediatric-specific emergency medications and a list of doses based on mg/kg, or dosing based on range of weight.
#3. If you want to avoid angry parents, good communication is key. Full circle communication and being detail-oriented are two key elements to make sure the child’s care team and caregivers are all on the same page. For example, if this is the child’s first infusion with a specific medication, make sure to let the parent know that the rate of infusion may be slower on the first infusion versus subsequent ones so they can plan accordingly.
If the child is getting IVIg, let the family know to keep the child well-hydrated 24 hours prior to and 24 hours after the infusion as there is a risk for headaches associated with IVIg in children. Similarly, if a child is receiving cyclophosphamide, make sure they are aware of the need to aggressively hydrate throughout the evening which will result in frequent bathroom breaks overnight.
If labs are needed prior to the start of the infusion, is the ordering doctor’s office information in the patient’s chart in case there are questions/concerns? Will the results automatically be released to the ordering doctor afterwards? This info should be up-to-date in the infusion software.
Given that children are constantly growing, make sure to check the dose of the medications being administered since most are dosed in mg/kg and may need to be adjusted infusion to infusion. If the child is getting a higher dose of the medication, make sure to convey this to the parent who may not be aware that their child has grown a few pounds since the last infusion. Conversely, some pediatric subspecialists will keep the same dose of medication even as the child grows in an attempt to taper and wean off the medicine. Again, communication with the ordering provider is key. Utilize infusion software to create flags and check for these subtle, but important changes. The total dose infused may change the number of vials of medication and ultimately coding/billing as well.
#4. Pain, pain, go away. In an ambulatory infusion center, resources such as a child life specialist won’t be available, so having the patient willingly participate can be difficult. But, providing anticipatory guidance can be helpful. Describe beforehand the steps that will take place during catheter placement. One option to help ease anxiety associated with pain is the use of numbing cream. Other ways to help decrease pain and anxiety include distraction techniques (watching an iPad/TV/phone) or using a vibration device such as the Buzzy Bee. For younger school-aged kids, asking them to blow bubbles or blow on a pinwheel can also help. Use the parent as your ally, and have them help distract the child. Never forget to use a securement device to prevent unscheduled restarts!
#5. Save the best for last. Hooray, you’ve finally made it to the end! Now it’s time to offer the child a reward for a job well done so they can associate the infusion center with something positive. Keep it simple. Something small like a sticker, bubbles, or Play-Doh is usually more than enough for them to leave with a smile on their face.
Although providing infusion care to a child may seem daunting, it’s extremely gratifying given the impact you make on their growth and development. The ingredients of a successful pediatric infusion day entail preparation, closed-loop communication, pain reduction techniques, and a small token for a job well done. Playing offense by anticipating possible adverse reactions based on the child’s diagnosis, past medical history and medication are also important. The patient (and their parents) will remember this period of their life for many, many years to come, so make it count!
Rheum to Grow is a private pediatric rheumatology practice in Houston, TX that also offers infusions services for children and adolescents. Some of the advantages of a non-hospital based pediatric infusion center include increased family satisfaction, convenient scheduling, and cost-effective care. For example, since Rheum to Grow has a significantly smaller volume than a children’s hospital, the infusion staff becomes well acquainted with the patients (and their parents), including their preferences, needs, and expectations. This instills greater confidence and less fear/anxiety in families. An additional bonus is that the ordering physician is typically present for all infusions, which families very much appreciate.
Infusions in a non-hospital-based center dramatically reduces cost. The exact same medication, administered using the same method, can be twice as expensive in a hospital setting, sometimes even three to four times more depending on the specialty medication. Let’s not forget parking fees, traffic, travel time, and the associated amount of missed school and work. Optimizing a patient’s site of care can dramatically reduce costs, and increase satisfaction and overall quality of care. With the ever-changing regulatory changes from payors, these advantages should help shape the growth of pediatric ambulatory centers over the next few years.
Guest Author: Rheum to Grow Founder Dr. Saimun Singla, DO, FAAP, FACR is a triple board-certified physician in general pediatrics, pediatric rheumatology, and integrative medicine. She is the only pediatric sub-specialist in Houston with this level of training and unique expertise. She also has a personal journey with rheumatoid arthritis and works to share her passion with others. View her TEDx, Why chronic illness is not a ‘battle’ here.
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