Survivorship Plans & Long-Term Follow-Up Care
Your Survivorship Care Plan
In this January 2022 episode of our Conversations Series, Dr. Monica Gramatges discusses the importance of electronic health records, survivorship care plans like Passport for Care, and long-term follow-up care clinics.
Childhood cancer survivors have unique health care needs. A survivorship care plan empowers survivors and their health care providers to work together to meet those needs.
As you move from active treatment to general care, you’ll need a record of your treatment to pass along to other physicians. Your survivorship plan is a concise, complete record of your treatment, specific medical concerns, and recommended health screenings — all in one place and easy to share with any medical providers that you see.
In a Children’s Cancer Cause survey of survivors from 2022, 30% of respondents answered that they don’t know or did not receive a summary of care or treatment history. It may not seem important now, but having this record may be critical as you get older.
A May 2023 study (Cancer Epidemiol Biomarkers Prev (2023) 32 (5): 634–641) examined geographic disparities in follow-up care for pediatric cancer survivors and found that “survivors from large towns and those who were adolescents at the time of diagnosis were more likely to receive suboptimal follow-up care compared with survivors from urban areas and those diagnosed younger than thirteen.”
COG Long-Term Follow-Up Guidelines:
Your care team most likely will give you a document or file that summarizes your treatment and makes some recommendations to your general care physician about possible risks from your treatment and how you should be monitored. The format and depth of these “Survivorship Care Plans” vary, depending on the institution, type of disease and treatment regimen. All of them, however, are based on the current scientific knowledge referenced by the Children’s Oncology Group and their long-term follow-up guidelines.
If, for whatever reason, you don’t have a summary of your care, you can request it be completed by your cancer care team. To format the information, you can use either of these forms developed by the Children’s Oncology Group. You can download from these links.
Of course, carrying around a stack of paper and asking different medical practices to input the data into their systems isn’t really convenient or practical for anyone. Fortunately there are a couple of alternatives to make this process simpler…
Passport for Care
Passport for Care is a web-based resource that will house your treatment information and make it accessible to both you and any medical provider you care to share it with.
You can request that your cancer clinic team enter your information – or you can ask the Passport for Care staff for help in enrolling in the program. Contact the Passport for Care navigator at svp-helpdesk@bcm.edu for assistance and you’ll also have access to recommendation functions for follow-up care guidelines and resources. Access to your information is protected via a secure access code.
In addition to the “container” for your treatment summary, Passport for Care also provides a Screening Recommendations Generator that allows you or a doctor to enter your treatments or the complete history of treatments and receive access to the potential late effects associated with those treatments as well as access to Health Links (survivor educational information), and a list of the relevant guidelines.
Cancer Survivorlink
Survivorlink gives you the ability to share your documents with health care providers and gives you a listing of late-effects clinics.
Survivorship Webinar
For this October 2020 Children’s Cancer Cause webinar focused on childhood cancer survivorship, we were joined by experts sharing new developments and best practices, and we shared some of what our organization is doing to help aid in the forward-momentum of this field.
Follow-Up Care
All cancer survivors should be receiving annual follow-up visits for management of their long-term survivorship and late effects. Long-term follow-up visits should include a full review of the survivor’s overall health and specific tests based on the survivor’s cancer, treatment, and side effects.
You should also identify a local primary care physician that you can visit for minor injuries and illnesses, and it is crucial for you to make sure this physician is fully briefed on your cancer history and has the contact information for your long-term follow-up team. In our summer 2022 survey of young adult survivors of childhood cancer, 18% of respondents told us that their general practitioner (or other non-oncology doctor) is “rarely” or “never” up-to-date about the survivor’s prior cancer history and related follow-up needs.
Key Resources from COG:
Medical ID on Smartphones
For most people -- especially teens and young adults -- a smartphone is everything. It’s a way to talk, text, take photos, play games, listen to music, read the news, and more. But it’s also a way to record your cancer history. Whether you have an Android or an Apple device, we have guides to help you set up your Medical ID, which can be accessed by anyone - like first responders - in the event of an emergency.
Hear it from the experts.
In late 2019, Children’s Cancer Cause hosted a webinar that covered the issue of long-term follow-up care in more detail. We were joined by Dr. Greg Aune of UT Health San Antonio, and Dr. Julia Rowland, the Senior Strategist Advisor at Smith Center for Healing and the Arts.
“As patients age, we know their risk increases.
As patients get further away from completion of therapy, the rates of follow-up and survivorship program decline. And so, if you think about what happens there: These health problems are not necessarily within the first 5-10 years of completing therapy. They’re more likely - in the childhood cancer population - to occur 20-30 years later and beyond. So right as patients are beginning to have an increased risk of health complications, that’s about the point where their follow-up drops off.”
“When I was first diagnosed with cancer, I had no idea how to advocate for myself and ask the right questions. As a result, I put up with a slew of side effects that could have been prevented and managed if I had the information to plan preemptively, and if I had the confidence to self-advocate.”
— Meaghan, 2020 College Scholar