PRSYM—At its heart, the practice of medicine in all forms is specifically centered on delivering compassionate, thoughtful and evidence-based clinical care. In the world of pediatric rheumatology, a range of issues, such as chronic pain, reproductive health and transitioning to adult providers, are of utmost importance to patients and physicians alike. These topics were addressed in a session at the virtual 2021 Pediatric Rheumatology Symposium (PRSYM).
The first speaker was Sabrina Gmuca, MD, MSCE, assistant professor of pediatrics and medical director of the Center for Amplified Musculoskeletal Pain Syndrome, Children’s Hospital of Philadelphia. Her presentation kicked off with a discussion of the relationship between chronic pain and adverse childhood experiences, such as experiencing bullying, parental separation or divorce, or having a household member with a mental illness.
Research evidence shows youth with chronic pain report higher rates of adverse childhood experiences than the general population and the association between adverse childhood experiences and chronic pain is intergenerational and dependent on the amount of adverse childhood experiences. In a cross-sectional analysis of the 2016–17 National Survey of Children’s Health, Groenewald et al. found children with exposure to one or more adverse childhood experiences had higher rates of chronic pain than those with no reported adverse childhood experiences (8.7% vs. 4.8%). Researchers also found the strongest associations were financial instability (adjusted odds ratio [aOR] 1.9, 95%, confidence interval [CI] 1.6–2.2), living with a mentally ill adult (aOR: 1.8, 95%, CI: 1.5–2.2) and experiencing race-based discrimination (aOR: 1.7, 95%, CI: 1.3–2.2).1
Dr. Gmuca explained the concept of resilience, the ability to bounce back in the face of adversity. Resiliency describes a child’s capacity for continuing on a healthy developmental trajectory despite living with excessive chronic pain.
At Ghent University Hospital, Belgium, researchers recruited 59 children with juvenile idiopathic arthritis ( JIA) and 48 parents of these patients and administered a survey, assessing general and pain-specific psychological flexibility of both parents and children and the psychosocial and emotional functioning and disability of the children. The study found child pain acceptance correlates with improved psychosocial functioning, lower levels of disability and lower negative affect. Additionally, the general psychological flexibility of parents contributed indirectly to the psychosocial functioning and affect of the child.2
These results indicate psychological flexibility—an individual’s ability to adapt to fluctuating situational demands, shift perspective and balance competing desires—can greatly aid children in building resiliency in the face of chronic pain. It also appears the psychological flexibility of parents impacts that of their children.
With respect to pain management in pediatric rheumatology patients, Dr. Gmuca advocated for several interventions. Mounting evidence supports the integration of exercise, graded exposure and caregiver involvement in multidisciplinary treatment approaches to managing chronic pain, she said. Mobile health technologies will continue to grow as a way for patients and physicians to interface as pain is assessed and treated, she added.
Finally, Dr. Gmuca said limited evidence exists for the use of pharmacologic agents for the management of pediatric pain. Thus, a holistic approach is likely more effective than one based purely on medications.
Cuoghi Edens, MD, FAAP, assistant professor, internal medicine and pediatrics, rheumatology and pediatric rheumatology, University of Chicago, discussed reproductive health in patients with childhood-onset rheumatic diseases. Reproductive health refers to a patient’s physical, mental and social well-being in all matters related to the reproductive system’s function and processes, not merely the absence of disease, dysfunction or infirmity.
Historically, having JIA has been shown to affect the age at which patients get married and have their first child, as well as the number of children they have and even their decision to have children at all. Many patients with pediatric rheumatologic conditions worry about the long-term consequences of their disease, their ability to care for children, the effects medications will have on fertility and pregnancy, and the chance of passing their disease on to their children. Rheumatologists are ideally suited to address these issues with patients, given the long-term nature of relationships in the clinic, frequent patient contact and their ability to serve as a trusted source for information.
Dr. Edens referenced MotherToBaby, a nonprofit organization that provides evidence-based information on the safety of medications and other exposures during pregnancy and breastfeeding. This website may help guide physicians as they navigate which medications are unsafe for patients to take when trying to conceive. Certain medications, such as methotrexate, leflunomide, mycophenolate mofetil and cyclophosphamide, must be stopped well in advance of pregnancy for fetus safety. Adjunct medications contraindicated during pregnancy include warfarin, angiotensin-converting enzyme inhibitors, angiotensin receptor blockers, lenalidomide and thalidomide.
Although many rheumatologists may not know or believe their pediatric patients are sexually active, Dr. Edens said many patients are and contraception should be discussed frequently. Contraception helps prevent unplanned pregnancy and can also help alleviate specific conditions, such as polycystic ovarian syndrome, endometriosis, acne and other diseases. The selection of appropriate contraception should be tailored to the needs and comorbidities of each patient.
Transitions to Adult Care
In the final presentation, Rebecca Sadun, MD, PhD, assistant professor of medicine and pediatrics, Duke University Medical Center, Durham, N.C., spoke about effectively transitioning patients to adult rheumatologic care.
Data regarding how patients fare during points of transition are sobering. Almost half of young adult patients are lost to care at the time of transfer,3,4 worse health status is seen between ages 18–25 than ages 12–17 or 26–34,5 and morbidity and mortality are worse post-transfer for pediatric chronic diseases.6
To help patients successfully navigate their care transitions, Dr. Sadun described three important concepts:
- Avoid repeating past disruptions;
- Enhance new therapeutic relationships; and
- Negotiate patient autonomy.
After transitioning to adult care, patients often fear changes in medical management will lead to disease flares. Pediatric rheumatologists can help prevent this situation by providing a good medical summary, with clear documentation of past and current treatments and the rationale for having arrived at a specific regimen.
For new therapeutic relationships, patients want their adult provider to get to know them as a person. In this regard, Dr. Sadun said, pediatric rheumatologists can include important social details and goals of care in the medical summary.
Finally, because it’s common for young adults to react negatively to parental involvement at times of transition, pediatric rheumatologists can use a team-based approach to guide transitions, empowering young adults to take control of their own disease.
If rheumatologists are willing to implement the strategies discussed in this session on clinical management, which provided tools to manage chronic pain, reproductive health and transitions of care in pediatric rheumatology, they will be likely to make a positive, long-term impact on the lives of their pediatric patients.
Jason Liebowitz, MD, completed his fellowship in rheumatology at Johns Hopkins University, Baltimore, where he also earned his medical degree. He is currently in practice with Skylands Medical Group, N.J.
- Groenewald CB, Murray CB, Palermo TM. Adverse childhood experiences and chronic pain among children and adolescents in the United States. Pain Rep. 2020 Aug 13;5(5):e839. eCollection Sep–Oct 2020.
- Beeckman M, Hughes S, Van Ryckeghem D, et al. Resilience factors in children with juvenile idiopathic arthritis and their Parents: The role of child and parent psychological flexibility. Pain Med. 2019 Jun 1;20(6):1120–1131.
- Hazel E, Zhang X, Duffy CM, et al. High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis. Pediatr Rheumatol Online J. 2010 Jan 11;8:2.
- Jensen PT, Karnes J, Jones K, et al. Quantitative evaluation of a pediatric rheumatology transition program. Pediatr Rheumatol Online J. 2015 May 24;13:17.
- Neinstein LS, Irwin CE Jr. Young adults remain worse off than adolescents. J Adolesc Health. 2013 Nov;53(5):559–561.
- Betz CL. Approaches to transition in other chronic illnesses and conditions. Pediatr Clin North Am. 2010 Aug;57(4):983–996.