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The United States answer to life after treatment was a written survivorship care plan, made an accreditation requirement for cancer centres. The randomised trial of it found no benefit on any patient-reported outcome, and the requirement was later replaced with a broader survivorship programme standard.
The story here is unusually clean, and it is worth telling in order because it is the best-documented example on this front of a sensible idea that did not work as implemented.
The recommendation. The Institute of Medicine's 2006 report From Cancer Patient to Cancer Survivor: Lost in Transition made survivorship a phase of care and recommended that every patient finishing treatment receive a written survivorship care plan: a summary of the treatment they had, and a plan for follow-up. The National Cancer Institute still describes it in those terms: "A follow-up care plan is a summary of your treatment, along with recommendations for your cancer care after treatment ends", which may also include "suggestions to help meet other needs, such as emotional, social, or financial issues", and "All cancer survivors should have follow-up care."
The trial. Grunfeld and colleagues randomised 408 women with early breast cancer who had completed primary treatment at least three months earlier, across nine tertiary cancer centres. Everyone was transferred to their own primary care physician for follow-up. The intervention group additionally received a survivorship care plan, reviewed in a 30-minute educational session with a nurse, and their physician received the plan and a follow-up guideline. The primary outcome was cancer-related distress at 12 months on the Impact of Event Scale. "There were no differences between groups on cancer-related distress or on any of the patient-reported secondary outcomes, and there were no differences when the two strata were analyzed separately." One thing did differ: "More patients in the intervention than control group correctly identify their PCP as primarily responsible for follow-up (98.7% v 89.1%)." The authors' conclusion was blunt: "The results do not support the hypothesis that SCPs are beneficial for improving patient-reported outcomes", and "SCPs were no better than a standard discharge visit with the oncologist to facilitate transfer."
What happened next. The American College of Surgeons Commission on Cancer had made a survivorship care plan an accreditation standard for its member programmes; it was subsequently revised into a broader survivorship programme standard rather than a document count. The intent of that change was to stop institutions generating documents to pass an audit and instead require a programme of services, which is the right direction and harder to verify.
How many people get one, and who. From the 2010 National Health Interview Survey, among 1,185 respondents with a cancer history, "the prevalence of any receipt of a written documentation was 68%, where 30% obtained written advice only and 8% were provided a written treatment summary only; only 31% received both". From the 2021 Behavioral Risk Factor Surveillance System cancer survivorship module, among 2,271 respondents, "about 12.12% of cancer survivors did not receive SCP, 35.03% received either treatment summaries or follow-up care instructions, and 52.84% received SCP", and survivors with three or more disabilities had lower odds of receiving one than those with none, adjusted odds ratio 0.44 (95% CI 0.22 to 0.88).
The lesson, stated precisely. The trial did not show that survivorship care is useless. It showed that handing somebody a document, even with a nurse explaining it, does not change how they feel a year later. What the field moved to instead is a framework of services and quality measures: Nekhlyudov and colleagues set out a quality of cancer survivorship care framework precisely because the recommendation to develop quality measures in survivorship "has yet to be fulfilled" a decade after the report. The United States also now has something the plan never was, a payment model that funds care plans alongside navigation, round-the-clock access and electronic symptom collection.
A transfer of care needs information to move and responsibility to be accepted. A written plan moves the information, which is why the trial's one positive finding was that patients knew who was now responsible, and does nothing about the capacity, the services or the follow-through, which is why nothing else moved.
Query for this technology: (TITLE:"After treatment in the United States: the survivorship care plan, and what the trial found" OR ABSTRACT:"After treatment in the United States: the survivorship care plan, and what the trial found") AND (cancer OR tumor OR tumour OR oncology OR carcinoma OR lymphoma OR leukemia OR leukaemia OR myeloma OR sarcoma OR melanoma OR glioma). Results are unfiltered search hits about After treatment in the United States: the survivorship care plan, and what the trial found, not a curated reading list.
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