NCT03482778Completed
Measuring Health Related Quality of Life in AYAs
Optimizing Health Related Quality of Life Measurement in Adolescent and Young Adult Oncology:
Source: ClinicalTrials.gov · Last updated 11 Feb 2025
Brief summary (registry, in English)
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.
- Status (registry)
- Completed
- Study type
- Observational
- Enrollment
- 165 (actual)
- First submitted
- 8 Mar 2018
- Start date
- 9 Feb 2018
- Primary completion date
- 3 Dec 2024
- Lead sponsor
- Wake Forest University Health Sciences
- Diseases
- Childhood cancers
- NCT number
- NCT03482778
What you commit to
- Study type: Observational
- Participants enrolled: 165
- From 9 Feb 2018 to the primary completion date, 3 Dec 2024
- 3 sites in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Prior treatment
- Currently receiving palliative or hospice care
- Had an infertility diagnosis prior to their cancer diagnosis
Other illness
- Diagnosed with basal cell skin cancer
- Experienced a cancer recurrence
- Report a significant psychiatric history
- AYA Caregivers:
Who the study is looking for
- 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
- 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.
Criteria the registry did not label
- AYA Patients:
Age in the registry: 15 years to 39 years · Sex: All · Does not accept healthy volunteers
Sites (3)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Robert H. Lurie Comprehensive Cancer Center at Northwestern University Coordinator of this site? Confirm its status | Chicago | United States | Unknown status |
| Brenner Children's Hospital Coordinator of this site? Confirm its status | Winston-Salem | United States | Unknown status |
| Wake Forest University Comprehensive Cancer Center Coordinator of this site? Confirm its status | Winston-Salem | United States | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.