# Lost in Transition: the 2006 report that defined survivorship care, and the care plan it invented

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## TL;DR

The 2006 Institute of Medicine report defined survivorship care, made ten recommendations, and invented the survivorship care plan. The plan became an accreditation standard, and then the randomised trials of it were negative.

## Summary

"From Cancer Patient to Cancer Survivor: Lost in Transition" was produced by the Committee on Cancer Survivorship of the Institute of Medicine and the National Research Council, edited by Maria Hewitt, Sheldon Greenfield and Ellen Stovall, and published by the National Academies Press in 2006. It opens by taking up the task Mullan had set in 1985, which it quotes, and it restricts itself to adults after primary treatment, a 2003 report having covered childhood cancer.

Its definition of quality survivorship care is four components, quoted from the report's own box: "Prevention of recurrent and new cancers, and of other late effects; Surveillance for cancer spread, recurrence, or second cancers; assessment of medical and psychosocial late effects; Intervention for consequences of cancer and its treatment ... and Coordination between specialists and primary care providers to ensure that all of the survivor's health needs are met." Those four words, prevention, surveillance, intervention and coordination, are the skeleton every survivorship service since has been built on.

Ten recommendations follow. The first is to establish survivorship as a distinct phase of cancer care. The second is the one that travelled: "Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained. This 'Survivorship Care Plan' should be written by the principal provider(s) who coordinated oncology treatment. This service should be reimbursed by third-party payors of health care." The rest cover evidence-based guidelines, quality measures, demonstration programmes for models of care, state cancer control plans, professional education, employment discrimination, access to insurance, and research funding. Read as a list, it is a reasonable description of what is still missing twenty years later.

The survivorship care plan became an American College of Surgeons Commission on Cancer accreditation standard and was adopted in several countries. Then it was tested. A randomised trial in breast cancer, reported in 2011, found no difference in the outcomes it measured. A systematic review in 2018 covering thirteen randomised and eleven non-randomised studies concluded: "Existing research provides little evidence that SCPs improve health outcomes and health care delivery." The authors' own explanation is that a document handed over at discharge is a long way from the distal outcomes being measured, and that the findings were more positive for proximal outcomes such as information received and for care delivery when the plan came with counselling rather than on its own.

That is the honest shape of this history. A report correctly identified a gap and proposed an instrument; the instrument was mandated before it was tested; the tests were negative; and the gap is still there. The useful lesson is the one the 2018 review draws, that the research question should move to whether the recommendations in a plan are subsequently acted on, which is a question about who owns the follow-up rather than about paperwork.

## Fields

- Kind: Term
- Last checked: 2026-10-02
- Also known as: From Cancer Patient to Cancer Survivor; Lost in Transition; IOM 2006 survivorship report
- Tags: rejuvenation; survivorship; history; care-plan

## Sources

- Institute of Medicine and National Research Council, From Cancer Patient to Cancer Survivor: Lost in Transition (National Academies Press 2006): https://doi.org/10.17226/11468
- From Cancer Patient to Cancer Survivor: Lost in Transition, executive summary (National Academies Press reader): https://nap.nationalacademies.org/read/11468/chapter/2
- Jacobsen et al., Systematic review of the impact of cancer survivorship care plans on health outcomes and health care delivery (JCO 2018;36:2088-2100): https://doi.org/10.1200/JCO.2018.77.7482
- Grunfeld et al., Evaluating survivorship care plans: results of a randomized clinical trial of patients with breast cancer (JCO 2011;29:4755-4762): https://doi.org/10.1200/JCO.2011.36.8373

## Connected records

- terms: [Seasons of Survival: the 1985 essay that named the problem](https://onco.cc/terms/rejuv-history-seasons-of-survival/), [The founding of the National Coalition for Cancer Survivorship, and the word survivor](https://onco.cc/terms/rejuv-history-survivorship-movement/), [The National Cancer Survivorship Initiative in England, and the Recovery Package](https://onco.cc/terms/rejuv-history-ncsi-england/)
- bottlenecks: [Nobody owns the follow-up once the oncology clinic lets go](https://onco.cc/bottlenecks/rejuv-agenda-nobody-owns-the-follow-up/), [Survivorship and late effects are neglected](https://onco.cc/bottlenecks/b-survivorship/)
- technologies: [Survivorship care and late-effects surveillance](https://onco.cc/technologies/survivorship-care-plan/), [Who is supposed to be watching: EBMT, CIBMTR, FACT-JACIE, and what a survivor is actually offered](https://onco.cc/technologies/rejuv-tx-long-term-follow-up-frameworks/)
- roadmaps: [Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it](https://onco.cc/roadmaps/rejuvenation-roadmap/)
- fronts: [Recovery & Rejuvenation](https://onco.cc/fronts/rejuvenation/), [Supportive Care & Survivorship](https://onco.cc/fronts/supportive-care/)
- institutions: [National Cancer Institute (NIH)](https://onco.cc/institutions/nci/)
- people: [Ellen L. Stovall](https://onco.cc/people/ellen-stovall/), [Fitzhugh Mullan](https://onco.cc/people/fitzhugh-mullan/)

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