Riding the Roller Coaster of a New Diagnosis

Many years ago, in the pre-biologics era, a diagnosis of antibody-positive rheumatoid arthritis (RA) in children was rather tragic, often foretelling a future of significant joint deformities, disability, and chronic pain.

Often, parents or grandparents of my current patients remember this era, which is why for them, hearing that their child/grandchild has been diagnosed with antibody-positive juvenile RA can be quite a blow.

Younger healthcare providers may only have seen photos of the deformities common in this bygone era in textbooks and therefore may not feel it is an issue that even needs to be discussed. However, because of the history many caregivers have with rheumatic diseases, their dismal potential view of the future should be addressed and addressed quickly. Only after they are reassured that their memories no longer represent a likely reality will they be able to truly hear what they are being told (a great resource for this is a website developed by the Arthritis Foundation called Kids Get Arthritis Too).1

We all know that RA in children can be successfully treated today with the use of biologic medications and that joint deformities only occur in children if there are long-standing problems with medication adherence (unless it a rare case where the patient doesn’t improve on a battery of different drugs). Personally, I have not had a patient who did not respond at all to biologic therapy in 8 years, but it’s important to note this disclaimer just in case.

When a new patient is coming into our office, often the parents, grandparents, and perhaps even the patient himself/herself has read about juvenile idiopathic arthritis (JIA) and adult RA. They are often aware that there are different types of arthritis with different prognostic indicators. Being able to give them a definitive diagnosis after we perform various testing often provides some level of comfort. For many patients and their caregivers, the diagnosis begins the first stage of grieving.

Grieving is quite normal in patients diagnosed with a chronic condition. Children may vacillate between different stages of grief through the years. They can both grieve about having a chronic disease and also for the “normal” childhood they wish they had. According to grief counselor Elisabeth Kübler-Ross, patients with a chronic disease as well as their caregivers typically pass through 5 stages of grief—denial, anger, bargaining, depression, and acceptance.2 What can be tricky in patients with juvenile RA is that the child and caregivers are often at different stages of grief, and it’s up to the healthcare provider to be aware of where everyone stands to help them move through each phase. Children, of course, will react differently to the news of their diagnosis based on their age.

I have found it helpful to give parents who are really struggling with the grieving process significant behind-the-scenes support. For starters, I will often schedule a follow-up phone call a week after the formal diagnosis has been reached so that all parties have time to reflect on our initial discussion, talk through any key items that may be particularly important for their family, and come back to me to talk through their feelings and concerns. This call also allows me to get a sense of where the full team stands in the grieving process so that I can better anticipate future needs and share important clinical pearls. Getting parental support from the get-go is vital—after all, it is the parent who ends up being the team manager and cheerleader, giving their son or daughter the encouragement they need to successfully manage their disease.

Especially in the pediatric setting, the job of the rheumatology nurse is to give our patients and their families generous doses of hope. They are setting off on a lifelong roller coaster ride, and it’s important to reinforce that patients will be able to pursue nearly any dream despite the ups, downs, and sharp curves that lay before them. There are so many well-known people who have succeeded despite being diagnosed with an autoimmune disease (Table 1)—with our care and patience, we’ll hopefully soon be able to add more names to this list.

Cathy Patty-Resk, MSN, RN-BC, CPNP-PC is a certified pediatric nurse practitioner in the Division of Rheumatology at Children’s Hospital of Michigan in Detroit, MI, where she provides medical services to inpatient and outpatient pediatric rheumatology patients.

1. Arthritis Foundation. Kids get arthritis too. Available at www.kidsgetarthritistoo.org. Accessed March 28, 2018.
2. Goodtherapy.org. Grief and chronic illness: How to find acceptance. Available at www.goodtherapy.org/blog/grief-and-chronic-illness-how-to-find-acceptance-0626145. Accessed March 28, 2018