Prospective medical assessment of adults surviving XXXX : study design, cohort characteristics, and feasibility of the St. Jude Lifetime Cohort study.

@entity5 @entity1 @entity1778 @entity706
BACKGROUND: To facilitate prospective medical assessment of adults surviving pediatric malignancies and advance knowledge about long-term @entity5 survivor health, St. Jude @entity1 's Research Hospital (SJCRH) is establishing a lifetime cohort of survivors. METHODS: Eligibility criteria for inclusion in the St. Jude Lifetime Cohort (SJLIFE) study include: (1) diagnosis of @entity5 treated at SJCRH; (2) survival >=  10 years from diagnosis; and (3) current age >=  18 years. Three levels of participation are offered: (1) comprehensive evaluation on SJCRH campus; (2) limited home evaluation; or (3) completion of health surveys only. A systematic recruitment structure based upon blocks of 50 @entity1 initially focused on @entity1778 and @entity706 survivors and @entity1 eligible for pilot studies. RESULTS: As of January 1, 2010, 1,625 (42%) of 3,900 eligible >=  10-year survivors have been contacted. Among the first 1,000 potentially eligible survivors selected for recruitment, 971 were subsequently confirmed to fulfill eligibility criteria. To date, 898/971 (92.5%) have been successfully contacted of whom 825 (91.8%) have agreed to participate. Among @entity1 , 88.6% agreed to comprehensive medical evaluation, 0.4% limited local evaluation, and 11.0% survey only. Anticipated minimum overall participation rate for medical evaluation is 75.3% (731/971). Comparison of those contacted who agreed versus declined to participate revealed a greater proportion of males who declined participation (P = 0.001). CONCLUSIONS: Early results of the SJLIFE study support its feasibility to recruit aging @entity5 survivors to research investigations evaluating late health outcomes by medical assessments.
