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Risk-based follow-up guidelines key surveillance to cumulative dose and radiotherapy field. Survivors frequently cannot obtain either, so the guidelines are unusable even where someone is willing to follow them.
The Children's Oncology Group Long-Term Follow-Up Guidelines and their harmonised international equivalents are indexed by exposure: this cumulative anthracycline dose implies this echocardiogram interval, this radiotherapy field implies this surveillance. The guidelines are good. The input is missing. Survivors frequently do not have their radiotherapy fields and doses recorded anywhere they can reach, and the commonest failure in revaccination after transplant is that neither the centre nor the general practice believes the schedule is theirs.
What is proposed is narrow and technical: a structured exposure record generated automatically from the treatment system at the end of treatment, containing cumulative doses by agent, radiotherapy fields and doses, surgical procedures and transplant conditioning, in a format another system can query. From that, the due surveillance for any given year can be computed rather than looked up, which is what turns a guideline into a reminder.
This is deliberately not a survivorship care plan. That instrument was mandated and then failed its randomised trials, and the 2018 review's recommendation was to focus on whether the recommendations in a plan are subsequently acted on. A document is read once; a machine-readable exposure record can be queried every year by whoever is looking after the person, which is a different thing with a different failure mode.
Shares Nobody owns the follow-up once the oncology clinic lets go, The handover from children's to adult services, where follow-up falls away, International Guideline Harmonization Group for late effects of childhood cancer, The Children's Oncology Group Long-Term Follow-Up Guidelines and the tags rejuvenation, survivorship.
Shares A survivorship passport app for adolescent and young adult survivors, Registries count diagnoses and deaths, and not what treatment left behind, The handover from children's to adult services, where follow-up falls away, International Guideline Harmonization Group for late effects of childhood cancer and the tags rejuvenation, survivorship.
Shares Registries count diagnoses and deaths, and not what treatment left behind, 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 and the tags rejuvenation, survivorship, open-problem.
Shares Registries count diagnoses and deaths, and not what treatment left behind, 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, Data silos and the tags rejuvenation, survivorship, open-problem.
Shares Nobody owns the follow-up once the oncology clinic lets go, Who is supposed to be watching: EBMT, CIBMTR, FACT-JACIE, and what a survivor is actually offered, 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, Survivorship care and late-effects surveillance and the tags rejuvenation, survivorship.
Shares Registries count diagnoses and deaths, and not what treatment left behind, 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 and the tags rejuvenation, survivorship, open-problem.
Shares Registries count diagnoses and deaths, and not what treatment left behind, International Guideline Harmonization Group for late effects of childhood cancer, The Children's Oncology Group Long-Term Follow-Up Guidelines, 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 and the tags rejuvenation, survivorship.
Shares 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 and the tags rejuvenation, survivorship, open-problem.