Loading
collectionsCollection
St Jude Lifetime Cohort Study (SJLIFE)
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.
Also called: SJLIFESt. Jude Lifetime Cohort
Overview
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.
The 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".
Read more 2 more paragraphsShow less
The 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.
What 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.
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.
Licence
Controlled access by application
Maintainer
St. Jude Children's Research Hospital
Notes
top- 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.
Similar pages
- CollectionInternational Guideline Harmonization Group for late effects of childhood cancer
Shares PanCareSurFup and the European survivor cohorts, Growth and final height after treatment in childhood, and growth hormone, Kidneys after cisplatin, ifosfamide, radiotherapy and nephrectomy in childhood, Education, work and the years that were interrupted and the tags rejuvenation, survivorship, paediatric, late-effects.
- TechnologyThe Children's Oncology Group Long-Term Follow-Up Guidelines
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.
- TechnologyLate deaths after childhood cancer, what causes them, and the proof that gentler treatment worked
Shares British Childhood Cancer Survivor Study (BCCSS), 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 and the tags rejuvenation, survivorship, paediatric, late-effects.
- TechnologyFertility in boys and young men treated for cancer, including testicular tissue banking
Shares PanCareSurFup and the European survivor cohorts, The pituitary, puberty and the hypothalamic axis after cranial radiotherapy in childhood, How much illness childhood cancer survivors carry, and at what age, Childhood Cancer Survivor Study (CCSS) and the tags rejuvenation, survivorship, paediatric, late-effects.
- TechnologyThe handover from children's to adult services, where follow-up falls away
Shares PanCareSurFup and the European survivor cohorts, 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.
- TechnologyBreast cancer after chest radiotherapy in childhood, and the screening that follows
Shares Second cancers after childhood cancer: the risk by treatment, and why it is falling, Childhood Cancer Survivor Study (CCSS), Survivorship and late effects are neglected and the tags rejuvenation, survivorship, paediatric, late-effects.
- TechnologyTeeth, jaws and facial growth after treatment in childhood
Shares 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.
- TechnologyAdolescents and young adults: a group with its own cancers, its own gap and its own needs
Shares Education, work and the years that were interrupted, How much illness childhood cancer survivors carry, and at what age, Survivorship and late effects are neglected and the tags rejuvenation, survivorship, paediatric, late-effects.
fronts
technologies
Bone after childhood cancer: peak bone mass, osteonecrosis and what rebuildsEducation, work and the years that were interruptedFertility in girls and young women treated for cancer, including ovarian tissue freezingFrailty and late effects in survivorsGrowth and final height after treatment in childhood, and growth hormoneHearing after platinum and cranial radiotherapy in a developing childHow much illness childhood cancer survivors carry, and at what ageKidneys after cisplatin, ifosfamide, radiotherapy and nephrectomy in childhoodMemory, attention and learning after treatment of a childhood cancerSecond cancers after childhood cancer: the risk by treatment, and why it is fallingThe heart after anthracyclines and chest radiotherapy in childhoodThe pituitary, puberty and the hypothalamic axis after cranial radiotherapy in childhood