# How much illness childhood cancer survivors carry, and at what age

Source: https://onco.cc/technologies/rejuv-paed-chronic-disease-burden/  
OnCo record `rejuv-paed-chronic-disease-burden` (Technology). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

The figures, with the cohort and the age attached, because they are misquoted more than any others. On self-report at a mean age of 26, 62.3 per cent of survivors had a chronic condition. On clinical testing, the cumulative prevalence of any chronic condition by age 45 was 95.5 per cent, and by age 50 a survivor had 17.1 conditions against 9.2 in matched controls.

## Summary

Four numbers are quoted constantly and almost never with their denominators. Here they are with them.

The Childhood Cancer Survivor Study, 2006. Among 10,397 five-year survivors diagnosed between 1970 and 1986, compared with 3,034 siblings, at mean ages of 26.6 and 29.2 years: 62.3 per cent of survivors had at least one chronic condition and 27.5 per cent had a severe or life-threatening one (grade 3 or 4). Against siblings the adjusted relative risk was 3.3 (95 per cent confidence interval 3.0 to 3.5) for any chronic condition and 8.2 (6.9 to 9.7) for a severe or life-threatening one. The cumulative incidence of a chronic health condition reached 73.4 per cent (69.0 to 77.9) thirty years after diagnosis, with 42.4 per cent (33.7 to 51.2) for severe, disabling or life-threatening conditions or death from a chronic condition. This is self-reported morbidity in a large, multi-institution, mostly young population. It is the source of "two thirds of survivors".

The St Jude Lifetime Cohort, 2013. Among 1,713 adult survivors, median age 32, median 25 years from diagnosis, assessed by systematic exposure-based clinical testing: the estimated cumulative prevalence at age 45 was 95.5 per cent (94.8 to 98.6) for any chronic health condition and 80.5 per cent (73.0 to 86.6) for a serious, disabling or life-threatening one. This is the source of "nearly all survivors". It is not the same statement as the one above and it does not contradict it: testing finds what asking does not.

The cumulative burden, 2017. Among 3,010 clinically assessed St Jude survivors, the cumulative incidence of chronic health conditions at age 50 was 99.9 per cent for grade 1 to 5 and 96.0 per cent (95.3 to 96.8) for grade 3 to 5. Counting conditions rather than people, by age 50 a survivor had experienced on average 17.1 conditions of any grade (16.2 to 18.1), of which 4.7 (4.6 to 4.9) were grade 3 to 5, against 9.2 (7.9 to 10.6) and 2.3 (1.9 to 2.7) in age- and sex-matched community controls. Second neoplasms, spinal disorders and pulmonary disease were the major contributors to the excess, and the burden ranged from 24.2 conditions (20.9 to 27.5) in survivors of central nervous system malignancies to 14.0 (11.5 to 16.6) in survivors of germ cell tumours.

Two cautions belong with all of these. First, the cohorts describe people treated decades ago, and treatment has been deliberately de-escalated since; the mortality trends in the companion record show that the de-escalation worked. Second, controls carry a burden too. The honest comparison is not 17.1 against nothing, it is 17.1 against 9.2: survivors are not uniquely ill, they are ill earlier and more.

What comes back, and when: this record is about accumulation rather than recovery. Individual conditions have their own records in this front, and some of them do reverse. What does not reverse is the earlier start.

## Fields

- Kind: Technology
- Status: established
- Last checked: 2026-10-02
- Tags: rejuvenation; survivorship; paediatric; late-effects; evidence:strong
- Principle: Treatment given during growth leaves two kinds of mark. Some tissues lose cells that are never replaced, so the deficit is fixed from the end of treatment and becomes visible only when ageing removes the reserve that hid it. Others are developmental: a growth plate, a developing cochlea, a myelinating brain or an ovarian reserve set before birth, where the injury shows as something that never arrives rather than something lost. The cumulative-burden method counts both, which is why it finds more than any survey.
- Strengths: Clinical testing finds conditions a questionnaire misses, and the method is reproducible; Figures are reported with the cohort, age and denominator, so the right one can be quoted for the right question; Matched community controls make the excess interpretable rather than alarming
- Limitations: The cohorts describe treatments given decades ago, which overstates risk for a child treated today; SJLIFE is one hospital's patients and 45.5 per cent of those eligible were not clinically evaluable; Nobody has an accurate count of how many survivors there are in Europe to plan services for

## Sources

- Wikipedia: https://en.wikipedia.org/wiki/Chronic_condition
- Chronic health conditions in adult survivors of childhood cancer (CCSS) (NEJM 2006): https://doi.org/10.1056/NEJMsa060185
- Clinical ascertainment of health outcomes among adults treated for childhood cancer (SJLIFE) (JAMA 2013): https://doi.org/10.1001/jama.2013.6296
- The cumulative burden of surviving childhood cancer: an initial report from the St Jude Lifetime Cohort Study (Lancet 2017): https://doi.org/10.1016/S0140-6736(17)31610-0
- Survivors of childhood and adolescent cancer: life-long risks and responsibilities (Nat Rev Cancer 2014): https://doi.org/10.1038/nrc3634

## Connected records

- trials: [Childhood Cancer Survivor Study (CCSS)](https://onco.cc/trials/ccss/)
- collections: [British Childhood Cancer Survivor Study (BCCSS)](https://onco.cc/collections/bccss/), [PanCareSurFup and the European survivor cohorts](https://onco.cc/collections/pancaresurfup/), [St Jude Lifetime Cohort Study (SJLIFE)](https://onco.cc/collections/sjlife/)
- ideas: [A national late-effects registry linking treatment exposures to outcomes decades later](https://onco.cc/ideas/idea-acc-national-late-effects-registry/), [A survivor biobank to find who will develop late effects before they do](https://onco.cc/ideas/idea-acc-survivor-biobank-late-effect-prediction/)
- cancers: [Acute lymphoblastic leukaemia](https://onco.cc/cancers/all-leukemia/), [Childhood cancers (all types)](https://onco.cc/cancers/childhood-cancers/), [Ewing sarcoma](https://onco.cc/cancers/ewing-sarcoma/), [Hodgkin lymphoma](https://onco.cc/cancers/hodgkin-lymphoma/), [Medulloblastoma](https://onco.cc/cancers/medulloblastoma/), [Neuroblastoma (paediatric)](https://onco.cc/cancers/neuroblastoma/), [Osteosarcoma](https://onco.cc/cancers/osteosarcoma/), [Wilms tumour (nephroblastoma)](https://onco.cc/cancers/wilms-tumor/)
- fronts: [Recovery & Rejuvenation](https://onco.cc/fronts/rejuvenation/), [Supportive Care & Survivorship](https://onco.cc/fronts/supportive-care/)
- technologies: [Adolescents and young adults: a group with its own cancers, its own gap and its own needs](https://onco.cc/technologies/rejuv-ayac-distinct-group/), [After treatment in low and middle income countries: mostly nothing](https://onco.cc/technologies/rejuv-access-survivorship-care-lmic/), [Bone after childhood cancer: peak bone mass, osteonecrosis and what rebuilds](https://onco.cc/technologies/rejuv-paed-bone/), [Fertility in boys and young men treated for cancer, including testicular tissue banking](https://onco.cc/technologies/rejuv-paed-fertility-male/), [Fertility in girls and young women treated for cancer, including ovarian tissue freezing](https://onco.cc/technologies/rejuv-paed-fertility-female/), [Frailty and late effects in survivors](https://onco.cc/technologies/rejuv-age-frailty-and-late-effects/), [Growth and final height after treatment in childhood, and growth hormone](https://onco.cc/technologies/rejuv-paed-growth-and-height/), [Hearing after platinum and cranial radiotherapy in a developing child](https://onco.cc/technologies/rejuv-paed-hearing/), [Kidneys after cisplatin, ifosfamide, radiotherapy and nephrectomy in childhood](https://onco.cc/technologies/rejuv-paed-kidneys/), [Late deaths after childhood cancer, what causes them, and the proof that gentler treatment worked](https://onco.cc/technologies/rejuv-paed-late-mortality/), [Memory, attention and learning after treatment of a childhood cancer](https://onco.cc/technologies/rejuv-paed-neurocognitive/), [Second cancers after childhood cancer: the risk by treatment, and why it is falling](https://onco.cc/technologies/rejuv-paed-second-cancers/), [Survivorship care and late-effects surveillance](https://onco.cc/technologies/survivorship-care-plan/), [Teeth, jaws and facial growth after treatment in childhood](https://onco.cc/technologies/rejuv-paed-teeth-and-face/), [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/), [The pituitary, puberty and the hypothalamic axis after cranial radiotherapy in childhood](https://onco.cc/technologies/rejuv-paed-pituitary-and-puberty/)
- terms: [Cure is not enough: when late effects stopped being an afterthought](https://onco.cc/terms/rejuv-history-cure-is-not-enough/), [Late effects and survivorship toxicity](https://onco.cc/terms/late-effects/), [Quality of life](https://onco.cc/terms/quality-of-life/)
- bottlenecks: [Registries count diagnoses and deaths, and not what treatment left behind](https://onco.cc/bottlenecks/rejuv-agenda-late-effects-are-not-counted/), [Survivorship and late effects are neglected](https://onco.cc/bottlenecks/b-survivorship/)
- 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/)

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