Background/Purpose: When I was 14, I was diagnosed with thrombocytopenia, which led to more testing and a diagnosis of systemic lupus erythematosus (SLE). As a pediatric patient, it was not uncommon for the physicians to talk with my parents for the duration of the appointment. I was not involved in many of my healthcare decisions and was often only included during the physical exam. This was a confusing time for both me and my parents, and the doctors didn’t have all the answers for them as my diagnosis was difficult and not typical.

Intervention: I was an astute student and educated myself heavily on my conditions and treatments so that I could understand what the doctor was talking about so that I would be the person that they spoke to, but intervention with my parents was also necessary. My parents and I agreed that they would help focus the doctor’s questions and discussion to me for the appointments. If the doctor asked them a question, they would turn and ask me to answer. They would not present my symptoms or their own questions and concerns to the doctor until after I was done.

Maintenance: I was an astute student and educated myself heavily on my conditions and treatments so that I could understand what the doctor was talking about so that I would be the person that who they spoke to, but intervention with my parents was also necessary too. My parents and I agreed that they would help focus the doctor’s questions and discussion to me for the appointments. If the doctor asked them a question, they would turn and ask me to answer. They would not present my symptoms or their own questions and concerns to the doctor until after I was done.

Quality of Life: Allowing me to manage my care and advocate for myself in medical appointments, even as a pediatric patient, prepared me for the transition to adult care. I feel that I can communicate with my doctors well and that the slow transition to medical independence has helped me to maintain the success I have in managing my health and communicating with healthcare providers. 

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/involving-pediatric-patients-in-their-own-care/