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The most widely used rulebook in childhood cancer survivorship, and the one that made follow-up exposure-based rather than diagnosis-based: what you were given decides what you are screened for. It comes with Health Links, plain-language sheets written for the survivor rather than the doctor, and it is free to download.
Before these guidelines existed, a survivor's follow-up depended on which cancer they had had and which hospital they were at. The Children's Oncology Group Late Effects Committee, Nursing Discipline and Patient Advocacy Committee replaced that with a single organising idea: follow-up is driven by exposure. Anthracycline at a given cumulative dose triggers one schedule, cranial radiotherapy another, alkylating agents a third, regardless of what the cancer was called.
The founding paper describes them as "risk-based, exposure-related clinical practice guidelines intended to promote earlier detection of and intervention for complications that may potentially arise as a result of treatment for pediatric malignancies", and states that they are "both evidence-based (utilizing established associations between therapeutic exposures and late effects to identify high-risk categories) and grounded in the collective clinical experience of experts (matching the magnitude of risk with the intensity of screening recommendations)". That second clause is the honest one: where the evidence runs out, expert judgement fills the gap, and the guideline says so rather than pretending otherwise.
Two features are worth noting. They are "intended for use beginning 2 or more years following the completion of cancer therapy", and "they are not intended to provide guidance for follow-up of the survivor's primary disease": they are about late effects, not about recurrence. And they ship with Health Links, which the Children's Oncology Group describes as "patient education materials designed to help childhood cancer survivors and their families understand potential long-term health effects after treatment", so that the survivor can hold the same information as the clinician.
They are revised periodically. The Children's Oncology Group's survivorship page carries an archive listing versions 1.0 through 5.0, and in the form OnCo could read it does not state a release date for the current version. That is recorded here as a gap rather than guessed at: a reader who needs the current version should take it from the Children's Oncology Group site itself. The guidelines were originally distributed at survivorshipguidelines.org, which now redirects to the Group's own survivorship pages.
How they relate to the others. The International Guideline Harmonization Group was formed precisely because these guidelines and their Dutch, Scottish and other counterparts disagreed, and the harmonised recommendations are now folded back into national guidelines including these. In the United Kingdom the arrangements are different again and have their own record.
What comes back, and when: this record is a process rather than a treatment. What it delivers is that somebody knows what a given survivor should be screened for, which in the largest cohort to measure it was true for a minority.
Late effects track therapeutic exposure far more closely than they track the original diagnosis, because the mechanism is dose to a tissue. Organising surveillance by exposure therefore produces a schedule that is correct for a survivor whose cancer is rare, whose protocol was unusual, or who was treated in another country, and it makes the treatment summary the operative document rather than the diagnosis code.
Query for this technology: (TITLE:"The Children's Oncology Group Long-Term Follow-Up Guidelines" OR ABSTRACT:"The Children's Oncology Group Long-Term Follow-Up Guidelines") 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 The Children's Oncology Group Long-Term Follow-Up Guidelines, not a curated reading list.
Shares The heart after anthracyclines and chest radiotherapy in childhood, Second cancers after childhood cancer: the risk by treatment, and why it is falling, How much illness childhood cancer survivors carry, and at what age, Childhood Cancer Survivor Study (CCSS) and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares International Guideline Harmonization Group for late effects of childhood cancer, Memory, attention and learning after treatment of a childhood cancer, Childhood Cancer Survivor Study (CCSS), Medulloblastoma and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares Growth and final height after treatment in childhood, and growth hormone, Kidneys after cisplatin, ifosfamide, radiotherapy and nephrectomy in childhood, The pituitary, puberty and the hypothalamic axis after cranial radiotherapy in childhood, Bone after childhood cancer: peak bone mass, osteonecrosis and what rebuilds and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares Long-term follow-up in the United Kingdom: what a survivor is actually offered, The handover from children's to adult services, where follow-up falls away, Childhood cancers (all types), Fragmented care and guideline gaps and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares How much illness childhood cancer survivors carry, and at what age, Childhood cancers (all types), Fragmented care and guideline gaps, Survivorship care and late-effects surveillance and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares International Guideline Harmonization Group for late effects of childhood cancer, The handover from children's to adult services, where follow-up falls away, Fertility in boys and young men treated for cancer, including testicular tissue banking, Fertility in girls and young women treated for cancer, including ovarian tissue freezing and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares Childhood cancers (all types), Hodgkin lymphoma and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares Long-term follow-up in the United Kingdom: what a survivor is actually offered, How much illness childhood cancer survivors carry, and at what age, Childhood Cancer Survivor Study (CCSS), Survivorship and late effects are neglected and the tags rejuvenation, survivorship, paediatric, late-effects.