Survivorship Care Plans: What are they and why do I need one?

Posted March 6th, 2018 by Be The Match and filed in News
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Linda Burns, M.D., Be The Match Vice President and Medical Director, HealthServices Research

A Survivorship Care Plan is a complete record of your medical history, all the treatments given before, during and after transplant, and what follow-up care you need to stay healthy. They keep your recovery on track by helping you coordinate your health care between the different doctors, nurses, social workers, and others that you’ll see after your transplant.

“The usual time to provide a Survivorship Care Plan to a transplant recipient is at about 12 months after the transplant,” says Linda Burns, M.D., Be The Match Vice President and Medical Director, Health Services Research. Many of the transplant care needs are decreasing by then, she notes, and the focus begins to shift to helping you stay healthy in the years to come.

What should a Survivorship Care Plan include?

Your plan should say which person on your health care team is responsible for which part of your ongoing care, says Dr. Burns. A Survivorship Care Plan is your personal tool ─ tailored just for your specific needs ─ to help you keep track of all your health care information in one place. Dr. Burns notes that a good Survivorship Care Plan should include:

  • A summary of treatment
  • A detailed plan for ongoing care
  • Follow-up schedules
  • Lists of any tests you need
  • Recommendations for how to watch for any treatment-related issues

How to use your plan

It is important to share your Survivorship Care Plan with your primary care doctor as well as any other specialists involved in your after-transplant care. This will help everyone communicate with each other.

Take your Survivorship Care Plan with you to all your visits with doctors and nurses. Use it as a reminder to ask questions, take notes, keep track of test results, and write down the next steps. “Transplant recipients have told us that having a plan helps relieve their worry that something won’t get done that’s important to help them stay healthy,” says Dr. Burns.

A recent research study of more than 450 transplant recipients showed this to be true. In this study, half the recipients received a personalized care plan, and half didn’t. Everyone in the study was 1-5 years past their transplant, and those who had a personalized care plan reported significantly less stress related to their cancer treatment.

“We strongly feel that empowering patients with knowledge and information will facilitate their survivorship care,” says Navneet Majhail, M.D., M.S., leader of the research study and director of the Blood and Marrow Transplant Program at the Cleveland Clinic Taussig Cancer Center.

Share your plan

Caregivers are important members of each transplant recipient’s support team. Parent caregivers can use the Survivorship Care Plan to keep track of their child’s health care needs, which will change as their child grows up and becomes an adult.

Dr. Burns also encourages adult transplant recipients to share their plan with caregivers and family members. It’s important for them to know what steps are needed to help their loved one stay healthy. “Caregivers and family members can help you coordinate visits and tests, remind you of questions to ask your care team, and may even notice symptoms that you haven’t. So it’s best to keep your support team informed.”

If you don’t have a Survivorship Care Plan

Your doctor or care team should give you a plan when you finish your transplant. If you’ve finished treatment but don’t have a Survivorship Care Plan, ask your transplant doctor or care team for one. Be sure to ask your doctor about anything in your Survivorship Care Plan that you don’t understand.

And if your transplant was several years ago, your care plan may need updating. That’s because transplant doctors know more than they did in the past about caring for transplant recipients, explains Dr. Burns. Plus, she notes, medical guidelines for follow-up care have changed with time. “Take your care plan to your appointments and ask them to review and update it so it meets your current needs.”

How Be The Match can help

You can also use free after-transplant care guides from Be The Match® to help keep your recovery on track. The guidelines have information on the recommended tests and exams for your 6 month and yearly checkups after transplant.

The guidelines are available in a free mobile app, online or print. There’s a version for your health care team, too. Bring a copy of your care guide with you to your next BMT appointment.

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