# Nobody owns the follow-up once the oncology clinic lets go

Source: https://onco.cc/bottlenecks/rejuv-agenda-nobody-owns-the-follow-up/  
OnCo record `rejuv-agenda-nobody-owns-the-follow-up` (Bottleneck). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

There are guidelines saying what a survivor should have checked and when. There is usually no mechanism that tells an individual survivor, ten years out, which checks they are due this year, or anyone whose job it is to notice they were missed.

## Summary

The transplant facet named this one precisely: there is a published list of what should be done, an inspected standard for the programmes that should do it, and registries that record outcomes, and there is no mechanism in either country that reliably tells an individual survivor, ten years out and living two hundred miles from the transplant centre, which tests they are due this year.

The same failure appears on every facet. After childhood cancer the largest survey of its kind concluded that despite a significant risk of late effects after cancer therapy, the majority of childhood cancer survivors do not receive recommended risk-based care; among physicians, half felt confident providing survivorship care and 94 per cent had unmet information needs about survivors' late-effect risks. After transplant the commonest failure in revaccination is a handover gap: the transplant centre assumes the general practice will do it, the general practice assumes the centre has. After anthracyclines, surveillance echocardiography is often not arranged once a survivor leaves paediatric care, and blood pressure, the most treatable determinant of whether a survivor develops heart failure, is routinely not measured at a cancer follow-up appointment. Survivors frequently do not have their radiotherapy fields and doses recorded anywhere they can reach, which makes a risk-based guideline unusable even where someone is willing to follow it.

The instrument designed to close this is the survivorship care plan, and the honest position on it is on the history record for the 2006 report: a 2018 systematic review of thirteen randomised and eleven non-randomised studies concluded that existing research provides little evidence that such plans improve health outcomes and health care delivery. The authors' recommendation was that future research focus on ensuring that the recommendations in a plan are subsequently acted on, which is a restatement of this bottleneck rather than a solution to it.

This is separable from the commissioning problem. A service can exist and still not be used, because nobody knows the person is due. Fixing it is an information problem first, an accountability problem second, and a money problem third.

## Fields

- Kind: Bottleneck
- Last checked: 2026-10-02
- Tags: rejuvenation; survivorship; open-problem; follow-up; handover
- Stage: access-delivery
- Severity: critical
- Metrics: Physicians confident providing survivorship care, and with unmet information needs about late-effect risks: About half confident; 94% with unmet information needs (OnCo paediatric facet, rejuv-paed-transition-to-adult-care); Evidence that survivorship care plans improve health outcomes and health care delivery: "Existing research provides little evidence that SCPs improve health outcomes and health care delivery." (Jacobsen et al., JCO 2018)
- Causes: Responsibility is shared between an oncology service that discharges and a primary care service that was not given the exposure history, so it sits with neither.; Treatment exposures are recorded in hospital systems in a form no other system can query, and often not at all for people treated decades ago.; Transition from children's to adult services is the point at which follow-up most often stops, and it coincides with leaving home and changing doctor.; The guidelines are risk-based, so they need an exposure record to be usable, and the exposure record is the thing survivors most often do not have.; No one is measured on whether a survivor got their checks, so nobody is accountable for them not happening.

## Sources

- 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
- Landier et al., Development of risk-based guidelines for pediatric cancer survivors: the Children's Oncology Group Long-Term Follow-Up Guidelines (JCO 2004;22:4979-4990): https://doi.org/10.1200/JCO.2004.11.032
- ClinicalTrials.gov NCT06281496: https://clinicaltrials.gov/study/NCT06281496

## Connected records

- technologies: [Long-term follow-up in the United Kingdom: what a survivor is actually offered](https://onco.cc/technologies/rejuv-paed-uk-long-term-follow-up/), [Revaccination after transplant: the schedules, and where the UK and the US differ](https://onco.cc/technologies/rejuv-tx-revaccination/), [Survivorship care and late-effects surveillance](https://onco.cc/technologies/survivorship-care-plan/), [The Children's Oncology Group Long-Term Follow-Up Guidelines](https://onco.cc/technologies/rejuv-paed-cog-ltfu-guidelines/), [The handover from children's to adult services, where follow-up falls away](https://onco.cc/technologies/rejuv-paed-transition-to-adult-care/), [The heart after anthracyclines and chest radiotherapy in childhood](https://onco.cc/technologies/rejuv-paed-heart/), [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/)
- terms: [Lost in Transition: the 2006 report that defined survivorship care, and the care plan it invented](https://onco.cc/terms/rejuv-history-lost-in-transition/)
- ideas: [Make the treatment exposure record machine-readable, so surveillance can be computed](https://onco.cc/ideas/idea-rejuv-exposure-record-a-machine-can-read/), [Risk-stratified follow-up: low-risk survivors to primary care with fast re-entry](https://onco.cc/ideas/idea-acc-risk-stratified-follow-up/), [Survivorship care plans generated automatically from the treatment record](https://onco.cc/ideas/idea-acc-auto-generated-survivorship-plans/)
- trials: [AlloCare: a stepped-care late-effects service after allogeneic transplant](https://onco.cc/trials/rejuv-trial-allocare/)
- 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/)

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