Survivorship Plans | Aplastic Anemia & MDS International Foundation

Survivorship Plans

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In 2006 the Institute of Medicine issued a report recommending that every cancer patient receive an individualized survivorship care plan that includes guidelines for monitoring and maintaining their health. In response to that report, many groups have now developed various types of "care plans" to help improve the quality of care of survivors as they move beyond their cancer treatment.  We realize that our organization represents three rare diseases, one of which is considered a cancer-- MDS. The survivorship care plan is applicable to all of our patients.  

What is a Survivorship Care Plan?
A Survivorship Care Plan is a document that includes a treatment summary and a coordinated follow-up plan of care, including standards for follow-up care and strategies to maintain your health. 
What are the key components of the Survivorship Care Plan?
Survivorship Care Plans typically include:

  • Contact information for the patient’s care team
  • A record of your medical history, including a summary of your diagnosis and treatment (e.g. type, side effects, and dates) or supportive services received
  • Schedule for follow-up tests and surveillance
  • Psychosocial assessment
  • Information on managing ongoing symptoms and what to expect after treatment (e.g. late effects and signs of recurrence)
  • Tips and suggestions for maintaining a healthy lifestyle
  • How to find quality health care and other support services

If my doctor doesn’t provide me with a Survivorship Care Plan, where can I get one?
If you are not automatically offered a Survivorship Care Plan, ask your healthcare provider if they can provide you with a template and/or help you create one. If your treatment ended a while ago, you may need to gather your medical records from other doctors first. You can create a plan at any time.

Survivorship Care Plan templates can be found at:
There are also sites, such as LIVESTRONG Survivorship Care Program, where survivors can enter their own treatment information and obtain a customized plan.

Who fills out, updates and reviews the Survivorship Care Plan?
Survivorship Care Plans are typically created by a member of your healthcare team by using your most recent medical records. Keep lines of communication open with your healthcare team and primary care provider to work on developing a successful Survivorship Care Plan.

Why should I have a Survivorship Care Plan?
Survivorship Care Plans improve communication between you and your healthcare team.  It helps to maintain an ongoing and informed dialogue between you and your doctors. Understanding what to expect after treatment can help survivors plan for follow-up care, make positive lifestyle changes, and make important health-related decisions.