In this series on transition to adult medical care, we’ll discuss tips and strategies from parents, providers, and family advocates for those who are starting to navigate the complex process of transitioning out of pediatric care and into adult health care. Thank you to Dr Raina Voss and Joy Gehner for their help in organizing the series.
Transitioning to adult care: the story of one cancer patient and his family
In this guest blog post a family shares their story of working towards young adult self-management.
Patients who are cancer survivors, even if their cancer is cured, often need specialized medical care for the rest of their lives due to their past illness and the treatments they’ve undergone. The mother of a former Hem-Onc patient – 20 years old now – feels grateful to the Seattle Children’s Hospital Heart Center for helping launch their transition process. “They did a one-day conference, and half of it was about transition to adult care. We all went – me, my husband and my son. It was very useful, even if not everything applied to us because my son’s heart condition is not congenital.”
Due to the drugs he’d been exposed to during cancer treatment, this young man is at risk for a number of side effects that might only show up later in life, as well as for a recurrence of cancer. His long-term follow-up care as an adult needs to include awareness of this health history and specific monitoring for certain health conditions. This creates a steep learning curve for him – even more so, given that his treatment also created some difficulties with short-term memory. His mother sees careful note-taking as one skill he needs to develop, as he moves towards full independence in his healthcare management.
This family began working towards self-management about four years ago. One very helpful tool was the “summary of care” that the Cancer and Blood Disorders Center put together for them to have. It includes his diagnosis, when and which specific drugs and radiation treatments he received, and his current healthcare and monitoring needs that result from this history. “There were mistakes on it at first!” says his mom. “But once we got those cleared up it was an excellent tool to use with him, to help him understand everything he needs to, for when I won’t be managing his care anymore.” Patient, parent and care team update this document every year together, and this young man’s mother has seen his readiness for self-management improve steadily over this time.
Still, there are important questions that remain for this family, even with a patient who is almost 21. How do they identify a primary care provider who is sufficiently knowledgeable to give him the guidance he needs? How do they ensure that his history is known if he needs emergency care in a new place, perhaps far from home? Billing complexities are another big question mark: “We benefited from uncompensated care support at the children’s hospital. Does that even exist at the adult hospital?”
Tips for parents and teens:
1. Find tools that can help with increasing self-management skills. The ‘summary of care’ is just one example this family found useful
2. If you find a tool, show it to your health care team. Go through and clear up misunderstandings or errors.
3. Identify a primary care provider early. This may take meeting a few different providers or practices before finding one who is knowledgeable and comfortable managing complex conditions from childhood.
4. Inquire ahead of time about insurance coverage, hospital policies regarding billing, and uncompensated care support.