Customizing a Care Plan

A number of organizations offer survivorship care plans that can be accessed online. Many are designed for use by healthcare professionals, but some can be initiated by patients. Survivors should look through each one to determine which fits their needs. They may end up using some or all of more than one plan. Many plans are designed for survivors of breast or colon cancer.

The best source for specific pages to document every aspect of treatment is provided by the Abramson Cancer Center of the University of Pennsylvania at oncolink.org/oncopilot.

The American Society of Clinical Oncology’s patient site provides Cancer Treatment Summaries at cancer.net/survivorship/asco-cancer-treatment-summaries.

Memorial Sloan-Kettering Cancer Center’s Survivorship Guide has a two-page summary of treatment and follow-up plan at mskcc.org/sites/www.mskcc.org/files/node/3019/documents/summary-cancer-treatment-and-follow-plan.pdf.

The Cancer Survivor’s Prescription for Living, published in The American Journal of Nursing, is a two-page treatment overview and follow-up plan available at nursingcenter.com/library/static.asp?pageid=721732.

Journey Forward’s Survivorship Care Plan Builder is designed for healthcare professionals but available to survivors. It can be accessed at http://journeyforward.org/professionals/survivorship-care-plan-builder. (This plan cannot be printed out unless it is filled in or an “X” is entered in each area.)

Another option is for survivors to create their own SCP with the same questions that have to be answered by hospitals for accreditation by the American College of Surgeons Commission on Cancer, which are drawn from the Institute of Medicine and National Research Council’s From Cancer Patient to Cancer Survivor: Lost in Transition. Some of these questions can be answered by asking for the original pathology report and, if electronic medical records are available, downloading treatment records, which will have the drugs that were given and the dosages. Of course, having the pathology report doesn’t mean it’s understandable, so the specifics below will need to be ascertained for follow-up by a primary care physician in the future.

1. Diagnostic tests performed and results (including radiology and pathology)

2. Tumor characteristics (e.g., site[s], stage and grade, hormonal status, biomarker information)

3. Surgery, chemotherapy, radiation, transplantation, hormone therapy, or other therapies provided, including agents used, treatment regimen, dates of initiation and completion, total dosage, identifying number and title of clinical trials (if any), indicators of treatment response and toxicities experienced during treatment

4. Inherited/genetic predisposition (if applicable)

5. Psychosocial, nutritional and other supportive services provided

6. Full contact information on treating institutions and key individual providers

7. Identification of key points of contact and coordinator of continuing care