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.
In Sum
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.
References
- 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.
