{"entity":{"id":"sjlife","kind":"collection","name":"St Jude Lifetime Cohort Study (SJLIFE)","aka":["SJLIFE","St. Jude Lifetime Cohort"],"tldr":"The study that brought survivors back to a hospital and tested them, rather than asking them what was wrong. It found that most of what it found had not been diagnosed: by age 45, on clinical testing, 95.5 per cent of survivors had a chronic health condition and 80.5 per cent had a serious, disabling or life-threatening one.","summary":"SJLIFE is the cohort that changed what the field believed, because it measured instead of asking. Everyone treated for a childhood malignancy at St Jude Children's Research Hospital who had survived ten years or more and was eighteen or older is eligible; participants are brought to the St Jude campus for a comprehensive evaluation, with limited home evaluation or survey-only participation offered as alternatives. The design paper describes those three levels of participation and reports that of the first 971 confirmed-eligible survivors contacted, 825 (91.8 per cent) agreed to take part, 88.6 per cent of them to comprehensive medical evaluation.\n\nThe 2013 report assessed 1,713 adult survivors, median age 32 (range 18 to 60), median 25 years from diagnosis (range 10 to 47), using systematic exposure-based medical assessments. The crude prevalence of adverse outcomes was highest for abnormal pulmonary function (65.2 per cent, 95 per cent confidence interval 60.4 to 69.8), hearing loss (62.1, 55.8 to 68.2), any endocrine condition (62.0, 59.5 to 64.6), any cardiac condition (56.4, 53.5 to 59.2) and neurocognitive impairment (48.0, 44.9 to 51.0). Liver dysfunction (13.0), osteoporosis (9.6), kidney dysfunction (5.0) and abnormal blood counts (3.0 per cent) were less common. Among survivors at risk after a specific treatment, the estimated cumulative prevalence at age 50 was 21.6 per cent for cardiomyopathy, 83.5 per cent for heart valve disorder, 81.3 per cent for pulmonary dysfunction, 76.8 per cent for pituitary dysfunction, 86.5 per cent for hearing loss, 31.9 per cent for primary ovarian failure, 31.1 per cent for Leydig cell failure and 40.9 per cent for breast cancer. At age 45 the estimated cumulative prevalence of any chronic health condition was 95.5 per cent (94.8 to 98.6) and of a serious, disabling or life-threatening one 80.5 per cent (73.0 to 86.6). The authors' own conclusion names what the method added: a systematic risk-based medical assessment \"identified a substantial number of previously undiagnosed problems\".\n\nThe 2017 cumulative-burden analysis went further and counted conditions rather than people. Of 5,522 eligible patients, 3,010 (54.5 per cent) had enrolled and had prospective clinical assessment. The cumulative incidence of chronic health conditions at age 50 was 99.9 per cent for grade 1 to 5 conditions and 96.0 per cent (95.3 to 96.8) for grade 3 to 5. 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; matched community controls carried 9.2 (7.9 to 10.6) and 2.3 (1.9 to 2.7). Burden varied by primary diagnosis, highest in survivors of central nervous system malignancies (24.2, 20.9 to 27.5) and lowest in survivors of germ cell tumours (14.0, 11.5 to 16.6). Second neoplasms, spinal disorders and pulmonary disease were the major contributors to the excess.\n\nWhat SJLIFE cannot do is speak for everyone: it is one hospital's patients, better followed than almost any other group of survivors in the world, and 45.5 per cent of eligible patients were not clinically evaluable in the 2017 analysis. Its figures are the right ones to quote for what clinical testing finds, and the Childhood Cancer Survivor Study's are the right ones for a large multi-institution population answering a questionnaire.","asOf":"2026-10-02","wikipedia":"https://en.wikipedia.org/wiki/Cancer_survivor","links":[{"label":"St Jude Lifetime Cohort Study","url":"https://sjlife.stjude.org/"},{"label":"Prospective medical assessment of adults surviving childhood cancer: study design and feasibility of the St. Jude Lifetime Cohort (Pediatr Blood Cancer 2011)","url":"https://doi.org/10.1002/pbc.22875"},{"label":"Clinical ascertainment of health outcomes among adults treated for childhood cancer (SJLIFE) (JAMA 2013)","url":"https://doi.org/10.1001/jama.2013.6296"},{"label":"The cumulative burden of surviving childhood cancer: an initial report from the St Jude Lifetime Cohort Study (Lancet 2017)","url":"https://doi.org/10.1016/S0140-6736(17)31610-0"}],"tags":["rejuvenation","survivorship","paediatric","late-effects","cohort"],"related":["ccss","bccss","pancaresurfup","rejuv-paed-chronic-disease-burden","rejuv-age-frailty-and-late-effects","idea-acc-national-late-effects-registry"],"cancers":[],"sections":["rejuvenation","supportive-care"],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":["st-jude"],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-survivorship"],"keyPapers":[],"journals":["journal-of-cancer-survivorship","pediatric-blood-and-cancer"],"dependsOn":[],"notes":["The two figures most often confused: 95.5 per cent is SJLIFE, by clinical testing, cumulative to age 45. 62.3 per cent is the Childhood Cancer Survivor Study, self-reported, at a mean age of 26.","Grades are a modified Common Terminology Criteria for Adverse Events scale applied to 168 chronic health conditions."],"url":"https://sjlife.stjude.org/","holds":"Clinically assessed health outcomes in adults treated for childhood cancer at St Jude, with systematic exposure-based medical testing rather than self-report, plus genomic and biospecimen data.","license":"Controlled access by application","maintainer":"St. Jude Children's Research Hospital"},"route":"/collections/sjlife/","neighbours":{"trial":[{"id":"ccss","kind":"trial","name":"Childhood Cancer Survivor Study (CCSS)","route":"/trials/ccss/"}],"collection":[{"id":"bccss","kind":"collection","name":"British Childhood Cancer Survivor Study (BCCSS)","route":"/collections/bccss/"},{"id":"pancaresurfup","kind":"collection","name":"PanCareSurFup and the European survivor cohorts","route":"/collections/pancaresurfup/"}],"technology":[{"id":"rejuv-paed-bone","kind":"technology","name":"Bone after childhood cancer: peak bone mass, osteonecrosis and what rebuilds","route":"/technologies/rejuv-paed-bone/"},{"id":"rejuv-ayac-education-and-work","kind":"technology","name":"Education, work and the years that were interrupted","route":"/technologies/rejuv-ayac-education-and-work/"},{"id":"rejuv-paed-fertility-female","kind":"technology","name":"Fertility in girls and young women treated for cancer, including ovarian tissue freezing","route":"/technologies/rejuv-paed-fertility-female/"},{"id":"rejuv-age-frailty-and-late-effects","kind":"technology","name":"Frailty and late effects in survivors","route":"/technologies/rejuv-age-frailty-and-late-effects/"},{"id":"rejuv-paed-growth-and-height","kind":"technology","name":"Growth and final height after treatment in childhood, and growth hormone","route":"/technologies/rejuv-paed-growth-and-height/"},{"id":"rejuv-paed-hearing","kind":"technology","name":"Hearing after platinum and cranial radiotherapy in a developing child","route":"/technologies/rejuv-paed-hearing/"},{"id":"rejuv-paed-chronic-disease-burden","kind":"technology","name":"How much illness childhood cancer survivors carry, and at what age","route":"/technologies/rejuv-paed-chronic-disease-burden/"},{"id":"rejuv-paed-kidneys","kind":"technology","name":"Kidneys after cisplatin, ifosfamide, radiotherapy and nephrectomy in childhood","route":"/technologies/rejuv-paed-kidneys/"},{"id":"rejuv-paed-neurocognitive","kind":"technology","name":"Memory, attention and learning after treatment of a childhood cancer","route":"/technologies/rejuv-paed-neurocognitive/"},{"id":"rejuv-paed-second-cancers","kind":"technology","name":"Second cancers after childhood cancer: the risk by treatment, and why it is falling","route":"/technologies/rejuv-paed-second-cancers/"},{"id":"rejuv-paed-heart","kind":"technology","name":"The heart after anthracyclines and chest radiotherapy in childhood","route":"/technologies/rejuv-paed-heart/"},{"id":"rejuv-paed-pituitary-and-puberty","kind":"technology","name":"The pituitary, puberty and the hypothalamic axis after cranial radiotherapy in childhood","route":"/technologies/rejuv-paed-pituitary-and-puberty/"}],"idea":[{"id":"idea-acc-national-late-effects-registry","kind":"idea","name":"A national late-effects registry linking treatment exposures to outcomes decades later","route":"/ideas/idea-acc-national-late-effects-registry/"}],"section":[{"id":"rejuvenation","kind":"section","name":"Recovery & Rejuvenation","route":"/fronts/rejuvenation/"},{"id":"supportive-care","kind":"section","name":"Supportive Care & Survivorship","route":"/fronts/supportive-care/"}],"institution":[{"id":"st-jude","kind":"institution","name":"St. Jude Children's Research Hospital","route":"/institutions/st-jude/"}],"bottleneck":[{"id":"rejuv-agenda-late-effects-are-not-counted","kind":"bottleneck","name":"Registries count diagnoses and deaths, and not what treatment left behind","route":"/bottlenecks/rejuv-agenda-late-effects-are-not-counted/"},{"id":"b-survivorship","kind":"bottleneck","name":"Survivorship and late effects are neglected","route":"/bottlenecks/b-survivorship/"}],"journal":[{"id":"journal-of-cancer-survivorship","kind":"journal","name":"Journal of cancer survivorship","route":"/journals/journal-of-cancer-survivorship/"},{"id":"pediatric-blood-and-cancer","kind":"journal","name":"Pediatric Blood & Cancer","route":"/journals/pediatric-blood-and-cancer/"}],"term":[{"id":"rejuv-history-cure-is-not-enough","kind":"term","name":"Cure is not enough: when late effects stopped being an afterthought","route":"/terms/rejuv-history-cure-is-not-enough/"}],"roadmap":[{"id":"rejuvenation-roadmap","kind":"roadmap","name":"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","route":"/roadmaps/rejuvenation-roadmap/"}]}}