Establishment of a Lifetime of Cohort of Adults Surviving Childhood Cancer

Childhood cancer predisposes to health risks that may not become apparent until many years after completion of therapy. The SJLIFE protocol is designed to establish a lifetime cohort of childhood cancer survivors treated at St. Jude Children's Research Hospital to facilitate evaluation of health outcomes in aging adults surviving pediatric cancer. The study focuses on the following Primary and secondary objectives: * To establish a lifetime cohort of childhood cancer survivors treated at St. Jude Children's Research Hospital to facilitate evaluation of health outcomes in aging children and adults surviving pediatric cancer. * To estimate the prevalence, cumulative incidence, and latency of selected late treatment complications following predisposing therapeutic exposures in children and adults surviving pediatric cancer. * To identify treatment, demographic, and psychosocial / behavioral related predictors of adverse health outcomes. * To develop risk profiles for adverse health outcomes across the age spectrum to guide development of clinical screening guidelines and risk-reducing interventions. * To identify factors that may be protective against the development of specific late treatment complications. * To generate data for a series of future hypothesis-driven trials * To serve as a source for the collection of samples from child and adult volunteers for future SJLIFE research. * To collect health outcomes data on a community control population for comparison purposes. * Characterize longitudinal social determinants of health (SDOH) to examine how living conditions, social integration, and structural inequality interact with personal social integrations/support to influence health.

SJLIFE will be implemented in progressive stages with specific objectives to permit knowledge gained in each phase to inform content/format/study design of subsequent stages. The planned stages of the study include 1) Pre-Recruitment Study, 2) Barriers to Participation Survey, 3) Pilot Study of Recruitment Strategies, 4) Pilot Studies of High-Risk Survivor Cohorts, 5) Cross-Sectional Study of 10-year survivors, and 6) Prospective Lifetime Cohort Study. Stage I entailed telephone interviews with a random sampling of potentially eligible survivors to obtain subjective feedback regarding barriers and facilitators to SJLIFE recruitment and participation. The random sample included thirty alumnus survivors representing a broad representation of race, gender, attained age, years from diagnosis and primary diagnostic groups. The interview content comprised assessment of interest, decision-making factors, and barriers to participation, current In Stage 2, the Barriers to Participation Survey will be distributed to a random sampling of 500 patients representative of the potentially eligible cohort by age, race, sex, geographic distribution, primary diagnosis and time from diagnosis; 200 patients will be randomly selected up front to receive follow-up communication by telephone if they fail to return completed surveys. Information obtained from responses to the questionnaire will inform a subsequent randomized recruitment trial and provide insight regarding retention procedures. In Stage 3, a pilot study was undertaken to assess feasibility and potential pitfalls in recruitment for the Lifetime Cohort. Introductory letters were sent to 300 alumni survivors, with a broad representation across targeted diagnostic groups, to invite their participation in the Lifetime Cohort. Recruitment approaches will be informed by the findings of the Barriers to Participation Survey. Parameters assessed were related to feasibility include 1) accuracy of contact information in hospital system (need for tracing of potentially eligible research participants); 2) number of eligible participants actively or passively declining study participation; and 3) reasons for declining participation. The pilot study provided insight regarding the need for implementing procedures to track potential study participants who are "lost to follow-up" or incentives to recruit and retain study participants. In Stage 4, pilot studies were undertaken in groups of survivors identified by SJLIFE investigators to be at high risk for cancer-related morbidity based on specific demographic, diagnostic, therapeutic, or genetic/familiar factors. In addition to utilizing data collected from the risk-based evaluations performed in the Cross-Sectional study these individuals had more extensive assessment beyond the screening recommendations outlined in the COG Guidelines to determine the frequency and more thoroughly characterize the extent specific treatment complications, as well as define the need for Покажи пълното описание...

Survivor Inclusion Criteria: * Patient will have a diagnosis of childhood malignancy (or neoplasm requiring similar therapy) that was treated or followed at St. Jude Children's Research Hospital. * Patient will be at least five years from diagnosis. * Patient is willing to participate at any level of study * Patient is willing to comply with the guidelines of St. Jude domiciliary care facilities * Patient or legally authorized representative must sign informed consent for study participation. Control Participant Inclusion Criteria: * ≥5 years of age * Non-first degree relatives or friends of St. Jude patients or former patients or SJCRH employees/affiliates who are not SJLIFE study team members, or family members of SJLIFE study team, or supervised by a SJLIFE study team members, or any volunteer not associated with St. Jude. * Participant does not have a diagnosis of childhood malignancy or childhood neoplasm requiring similar therapy (i.e., diagnosed \<21 years of age). * Participant is not currently pregnant or lactating. * Patient is willing to comply with the guidelines of St. Jude domiciliary care facilities. * Patient must sign informed consent for study participation. Gait and Mobility Lab Assessment Inclusion Criteria: * Enrolled participant in the SJLIFE study. * At-risk for long lasting difficulties with walking or other aspects of mobility. * Participant is not currently pregnant. * Participant or their designee signs informed consent for Gait and Mobility Lab Assessment participation. Survivor/Control Exclusion Criteria: * Patient or control subject refuses to participate at any level of study Gait and Mobility Lab Assessment Exclusion Criteria: * Prospective participant or their designee declines participation in the Gait and Mobility Lab Assessment.