Outcomes of Health Care Transition for AYA With a Cancer Predisposition
ConditionGenetic Predisposition
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age18+
SponsorSt. Jude Children's Research Hospital
About this trial
This observational study evaluates whether adolescents and young adults (AYAs) with a cancer predisposition syndrome (CPS) establish and maintain adult health care and continue CPS-specific cancer surveillance after graduating from pediatric care at St. Jude Children's Research Hospital (SJCRH). Participants will complete a Readiness Assessment and periodic surveys over 8 years post-graduation.
Primary Objectives
* To evaluate whether adolescents and young adults (AYAs) with a cancer predisposition syndrome (CPS) report they have established care with adult health care providers and pursue CPS-specific cancer surveillance within 1-year post-graduation from SJCRH. * To evaluate whether AYAs with CPS report they maintain care with adult health care providers and continue CPS-specific cancer surveillance 3 years post-graduation from SJCRH.
Exploratory Objectives:
* To evaluate whether AYAs with CPS report they continue to maintain care with adult health care providers and complete CPS-specific cancer surveillance longitudinally 5 years and 8 years post-graduation from St. Jude Children's Research Hospital (SJCRH). * To examine clinical correlates of establishing care with adult providers and initiating CPS-specific cancer surveillance post-graduation from SJCRH. * To identify the tumors diagnosed in AYAs with CPS after they graduate from SJCRH and determine how these tumors were identified (i.e., through specific surveillance tests or based on symptoms). * To identify barriers and facilitators AYAs face when establishing and maintaining adult health care and pursuing CPS-specific cancer surveillance.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
Participants are ≥18 years of age
Participants with a molecular or clinical diagnosis of a Cancer Predisposition Syndrome (CPS) who are graduating or have graduated from SJCRH.
Participants who were a patient of the SJCRH Cancer Predisposition Clinic for at least 3 years before graduating from SJCRH
Participants who require cancer/tumor surveillance within 1 year after graduation from SJCRH. Required cancer/tumor surveillance in adulthood is defined as having a CPS with expert guidelines recommending cancer/tumor surveillance in adulthood
Disqualifiers
Participants who are not their own legal medical decision-maker.
Trial population
All participants who meet eligibility criteria and consent to enrollment on the study
Trial design
Design model
Cohort
Time perspective
Prospective
Treatments tested in this trial
Readiness Assessment
BehavioralElectronic assessment administered 1 month post-graduation to evaluate transition preparedness.
Transition Outcomes Survey A
BehavioralAdministered at 1 and 3 years post-graduation to assess health care engagement and psychosocial outcomes.
Transition Outcomes Survey B
BehavioralAdministered at 5 and 8 years post-graduation to assess long-term outcomes and cancer surveillance adherence.
Treatment groups
56 Participants
are divided into 1 treatment groupGroup A: Transition Cohort3 interventions
Trial outcomes
Primary outcomes
1
Establishment of Adult Health Care
Proportion of Young Adults with Cancer Predisposition Syndromes Who Have an Identified Adult Medical Provider Managing Cancer Surveillance One Year Post-Pediatric Care Transition
Time frame
Evaluated 1 year after consent from the study.2
Maintenance of Adult Health Care
Proportion of Young Adults with Cancer Predisposition Syndromes Who Maintain an Identified Adult Medical Provider for Cancer Surveillance Three Years Post-Pediatric Care Transition
Time frame
Evaluated 3 years after consent from the study.Sponsors and contacts
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Source ClinicalTrials.gov