Measuring Health Related Quality of Life in AYAs
Completed
Conditions studied: Oncology, Quality of Life
In brief
AIM1a: AYAs with cancer experience many challenges that impact their health-related quality of life (HRQOL) but few measures adequately capture AYAs' HRQOL in valid and reliable ways. The main goal of the study is to expand the use of the Patient-Reported Outcome Measurement Information System (PROMIS) to provide valid and reliable assessment of important HRQOL concerns for AYAs. The study team will do this by validating existing PROMIS measures and developing and validating new measures of financial distress, fertility/parenthood concerns, and body image concerns for AYAs with cancer. AIM1b: Investigators have developed conceptual frameworks and created item pools for body image, fertility, and financial burden domains and are ready to proceed with the next aim of our measure development work, cognitive interview testing.
Key facts
- Study ID
- NCT03482778
- Run by
- Wake Forest University Health Sciences
- People needed
- 165
- Starts
- 2018-02-09
- Expected to finish
- 2024-12-03
- Last updated by the study team
- 2025-02-11
Who can join
Age: 15 and older, up to 39. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- 15 to 39 years of age
- Diagnosed with cancer at 15 to 39 years of age
- Able to read and understand English
- Have a new cancer diagnosis and are receiving curative treatment OR are currently 0 to 5 years post-treatment
You may not qualify if…
- Diagnosed with basal cell skin cancer
- Experienced a cancer recurrence
- Currently receiving palliative or hospice care
- Had an infertility diagnosis prior to their cancer diagnosis
- Report a significant psychiatric history
- AYA Caregivers:
- Inclusion Criteria:
- 18 years or age or older.
- Able to read and understand English
- Have a child/ward/partner for whom they are providing care and at least partly financially responsible.
- Have a child/ward/partner who is 15 to 25 years of age and meets the other criteria as an eligible AYA participant based on the AYA patient inclusion and exclusion criteria.
Where it is running
- Robert H. Lurie Comprehensive Cancer Center at Northwestern University — Chicago, Illinois, United States
- Brenner Children's Hospital — Winston-Salem, North Carolina, United States
- Wake Forest University Comprehensive Cancer Center — Winston-Salem, North Carolina, United States
Full record on ClinicalTrials.gov
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