Background/Purpose: When I was 13, life took an unexpected turn with a diagnosis of Juvenile Idiopathic Arthritis (JIA). Overnight, my world transformed into a cycle of intense pain and limited mobility, making everyday activities a challenge. It took four long years of trial and error to finally discover a medication that brought relief. As I neared adulthood, a new set of hurdles emerged. Transitioning from pediatric to adult care posed daunting questions: How would I manage my healthcare on my own? Where could I find a trustworthy adult rheumatologist? What resources were available to support this new chapter of my journey? Navigating these uncertainties required resilience and determination. It was a journey of learning to advocate for myself, seeking out the best medical professionals, and uncovering resources to ensure I could thrive despite the challenges of JIA.

Intervention: Engaging in research provided me with foundational knowledge on transitioning from pediatric to adult care. My involvement with the Patient and Community Engagement in Research (PaCER) program was particularly enlightening. Through a collaborative project, I worked with peers who had experienced this period of transition of care and then we conducted research on other patients going through transition of care. Our research highlighted the challenges young adults face, such as changes in care delivery and increased patient responsibility. It became clear that thorough preparation and accessible resources are essential for a smooth transition (Currie, Gillian R et al.). This experience deepened my understanding before I transitioned myself a year later.

Maintenance: Since transitioning, I have taken several steps to manage my healthcare more effectively. I prepare thoroughly for appointments, keeping a list of questions and updates on my condition. I maintain a contact list of essential healthcare providers, including my new adult rheumatologist, my patient support medication program team and more. I actively communicate my needs and concerns during medical appointments. I research and create resources for myself and others going through this phase.

Quality of Life: My quality of life has significantly improved through enhanced self-advocacy and understanding of my condition. By taking charge of my healthcare and using available resources and support systems, I successfully transitioned from pediatric to adult care despite initial challenges. Developing self-advocacy skills empowered me to make informed decisions and communicate effectively with healthcare providers. The guidance from medical professionals and community resources was crucial in managing my condition. Reflecting on this journey, I am now better equipped to handle my healthcare needs and advocate for myself, highlighting the importance of preparation, education, and support in navigating healthcare transitions.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/bridging-the-gap-from-pediatric-to-adult-rheumatology-care/