Young Adult Survivors United Cancer Research Registry
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Cancer
- Sponsor
- Young Adult Survivors United
- Enrollment
- 192
- Locations
- 1
- Primary Endpoint
- Anxiety
- Status
- Terminated
- Last Updated
- 6 months ago
Overview
Brief Summary
The goal of this observational research registry is to learn about health, wellbeing, and needs of survivors of young adult cancer (diagnosed between the ages of 18 and 39). The main question[s] it aims to understand are:
- What are the levels of depression, anxiety, social support, and financial distress
- Determine effectiveness of YASU programming by measuring changes over time
With this registry, the investigators also plan to identify survivors who may be eligible for participation in future research studies pertaining to young adult cancer.
Participants will be asked to complete electronic surveys every 6 to 12 months during participation in the registry.
Detailed Description
The study will be conducted online.
Investigators
Eligibility Criteria
Inclusion Criteria
- •Cancer diagnosis received between the ages of 18 and
- •Able to speak and read English
Exclusion Criteria
- •Inability to provide consent (such as neurological illness or mental incapacity)
- •Has not registered as a member of YASU
Outcomes
Primary Outcomes
Anxiety
Time Frame: enrollment in registry, 6 months later, yearly until death
General Anxiety Disorder-7 (GAD-7). Scores range from 0-21 with higher scores indicating higher levels of anxiety.
Financial Toxicity
Time Frame: enrollment in registry, 6 months later, yearly until death
COST: A FACIT Measure of Financial Toxicity (COST - FACIT (Ver 2)) Scores range from 0-44. The higher the score, the better the Financial Well-Being
Needs Assessment
Time Frame: enrollment in registry
AYA Psycho-Oncology Screening Tool (AYA-POST) There is no scoring required for this tool.
Depressive symptoms
Time Frame: enrollment in registry, 6 months later, yearly until death
Patient Health Questionnaire- 9 (PHQ-9) Scores range from 0-27, with higher scores indicating more depressive symptoms.
Social Support
Time Frame: enrollment in registry, 6 months later, yearly until death
MOS Social Support Survey Instrument The survey consists of four separate social support subscales and an overall functional social support index. A higher score for an individual scale or for the overall support index indicates more support. MOS Social Support Survey Instrument Measure of Social Support Survey Instrument
Secondary Outcomes
- Name, address, email, phone number(enrollment in registry)