The following is written by Brooke Cherven, RN, MPH, CPON & Lillian Meacham, MD.
Survival rates for childhood cancer have grown over the past few decades and today most children diagnosed with cancer will become long-term survivors. The treatments used to cure their cancer can cause health problems, or late effects, after treatment. In order to be sure survivors are receiving appropriate screening for late effects they need lifelong yearly screening with a healthcare provider who is knowledgeable about survivorship care.
Survivors face many transitions of care. The first major transition is from on- therapy to off-therapy and then to survivor clinic where medical care is focused on prevention and early detection of late effects. The Aflac Cancer Survivor Program begins seeing patients when they are two years off treatment. Survivors may still see their oncologist for follow-up in addition to yearly visits to the survivor program. If you are two years off treatment you can talk with your oncologist about being referred to the survivor program. In survivor clinic, survivors will receive a Survivor Healthcare Plan which includes information about the survivor’s cancer diagnosis and treatment, late effects that can occur after treatment and tests needed to screen for those late effects.
As survivors finish high school and turn 18 years of age, they face two transitions. They face the legal transition which requires they take charge of their health care decisions, including agreeing to medical treatment or research projects and signing consents. At the finish of high school, they face the transition to further education or enter the work force. Many times this transition involves moving from living with parents to living independently. When survivors move to a new area, either a college or university or new city, they will need to find a healthcare provider in their area who can become familiar with their healthcare needs.
Children’s Healthcare of Atlanta sees patients until they are 21 years of age, at which time they transition to the adult healthcare system. This transition can be especially challenging for survivors who have many healthcare needs and see various subspecialists, such as an endocrinologist or cardiologist. Most important in this transition will be for the survivor to find a provider who is knowledgeable about long-term survivorship care. This may be a young adult survivor clinic, like the clinic at Emory University. Survivors can also be followed by their primary care provider using their survivor healthcare plan as a “roadmap to survivorship” which tells them what screening and tests are needed to monitor for late effects.
A common challenge among these transitions is the communication of past treatment and need for specialized follow-up care. Many adult healthcare providers are not familiar with the special healthcare needs of survivors. Survivors often find themselves educating their providers about survivorship healthcare and advocating for the specific survivorship based follow-up which is different from routine healthcare. Perhaps the most important tool in making sure survivors receive the necessary healthcare is their Survivor Healthcare Plan. Sharing their Survivor Healthcare Plan with their healthcare providers can help survivors quickly communicate their health history and need for follow-up.
Cancer SurvivorLink is a website built for survivors and providers to help with communication about survivorship care. SurvivorLink provides educational information for survivors and families, as well as includes a section built for healthcare providers to learn about evidence based care of survivors. On SurvivorLink, survivors can store their Survivor Healthcare Plan and any other important health documents so they always have access to them. Many survivors often report having lost the paper copy of their survivor healthcare plan that they received in clinic. By storing their document on SurvivorLink, they always have access to their important health documents which are stored in a secure format on the web. SurvivorLink is also a tool to share these documents electronically with their healthcare providers as an easy way to communicate their health history and future healthcare needs.
The Aflac Cancer Survivor Program has developed partnerships with several colleges and universities in Georgia and worked to educate providers in the student health centers to provide care to childhood cancer survivors during the time they are students on those campuses. If you plan to attend college let the survivor team know so we can help get you connected with student health.
CURE – this year through the Hayley Hunter Research Fund – has funded a number of research grants to allow the cancer survivor program to learn more about the needs of teenage and young adult survivors as they face transition. This year’s project will focus on how SurvivorLink can improve transitions of care. As part of the CURE grant, on Saturday, May 4, 2013 from 8:30 am – 12:30 pm at Children’s at Scottish Rite, the Aflac Cancer Center Survivor Program plans to offer a conference with information about transition of care for teenagers and young adults. For more information on this conference check the website www.choa.org/survivorshipconference in early 2013 for details.
As survivors become teenagers it’s important for both parents and their healthcare providers to include them in the conversations about their healthcare. If your child is getting close to turning 18 and graduating from high school talk with him/her about the responsibility ahead for their health. When you visit your pediatrician, your oncologist and your survivor team, talk with your providers about how to prepare for transition to adult healthcare.