Prospective medical assessment of adults surviving childhood cancer: Study design, cohort characteristics, and feasibility of the St. Jude Lifetime Cohort Study

Abstract

Background To facilitate prospective medical assessment of adults surviving pediatric malignancies and advance knowledge about long-term childhood cancer survivor health, St. Jude Children’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 childhood malignancy 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 patients initially focused on leukemia and lymphoma survivors and patients eligible for pilot studies. Results As of 01/01/2010, 1625 (42%) of 3900 eligible ≥ 10 year survivors have been contacted. Among the first 1000 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 participants, 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 childhood cancer survivors to research investigations evaluating late health outcomes by medical assessments.

Adult Survivors of Childhood Cancer Have Poor Adherence to Dietary Guidelines

“…The SJLIFE cohort comprises adult survivors of childhood cancer who were treated at St. Jude ChildrenÕs Research Hospital and who survived $10 y after cancer diagnosis (2,9). The primary aim of the SJLIFE cohort is to systematically and prospectively assess health outcomes among childhood cancer survivors as they age.…”

“…Medical records of childhood cancer survivors were abstracted for cancer diagnosis and treatment exposures by using a protocol similar to that used in the Childhood Cancer Survivor Study (9). This includes abstraction of all chemotherapy received, including cumulative doses for 32 specific chemotherapeutic agents, surgical procedures, and radiation treatment fields, dose, and energy source.…”

Pulmonary Function after Treatment for Childhood Cancer. A Report from the St. Jude Lifetime Cohort Study (SJLIFE)

“…The detailed methods used for ascertainment, recruitment, and evaluation of this cohort were reported previously (18). Body mass index was calculated and categorized using the National Heart, Lung, and Blood Institute methods (19).…”

Running on Empty: Cardiovascular Reserve Capacity and Late Effects of Therapy in Cancer Survivorship

“…Of relevance, the CCSS investigators recently established the St Jude Lifetime Cohort, which will, among other things, evaluate physiologic mechanisms underlying therapy-induced late effects in adult childhood cancer survivors using a wide battery of quantitative assessments together with collection of patient-reported outcomes and tissue specimens. 57 The establishment of similar cohort studies in adult patients with breast and other cancers that include evaluation of CVRC are urgently required to fully understand the prevalence, magnitude, and pathophysiologic mechanisms of therapy-induced late cardiovascular effects. Such efforts, in conjunction with existing tools used in the oncology setting, should inform treatment stratification, mortality-risk prediction, and surveillance of therapy-induced toxicity/recovery across the cancer survivorship continuum.…”