Optimizing Health Related Quality of Life Measurement in Adolescent and Young Adult Oncology

This study is looking at how adolescent and young adults (AYAs) with cancer, aged 15-39, respond to surveys about their health and well-being. The goal is to improve the questions used to measure quality of life in people with cancer and other long-term health conditions. You would complete surveys and questionnaires, which should take less than 30 minutes. This study aims to refine tools that measure things like body image, fertility, and financial challenges. Success will be measured by developing improved question banks for these topics over approximately two years. The study is currently observational, meaning it involves collecting information without giving any specific treatments.

Study design
This is an observational study with a planned enrollment of 3000 participants. It is not a treatment study but focuses on collecting information through surveys.
What's involved
You would complete self-report questionnaires via Redcap, which should take less than 30 minutes.
Compensation
Not stated in the trial record.
Follow-up
The primary endpoints, which involve refining item pools and developing item banks, are measured up to study completion, approximately 2 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT06897137

Optimizing Health Related Quality of Life Measurement in Adolescent and Young Adult Oncology

Recruiting
Not specifiedAges 15+Observational
Wake Forest University Health Sciences
~3,000 participants
Updated 2026-06-30 on ClinicalTrials.gov
What's tested:Surveys/Questionnaires

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Refining of Item Pools - Development of Four Item Banks
Measured over Up to study completion, up to approximately 2 years
Malignant Solid Neoplasm
Hematopoietic Neoplasms
Lymphatic System Neoplasm

NCT06897137

Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • Wake Forest Baptist Comprehensive Cancer Center

    Winston-Salem, North Carolinastudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

  • John Salsman · PRINCIPAL_INVESTIGATOR · Wake Forest Baptist Comprehensive Cancer Center

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Eligibility criteria

Inclusion

Young adults between the ages of 15 to 39 years;
First diagnosed with cancer during 15 to 39 years of age;
Able to read and understand English;
Live in the United States;
Have a new cancer diagnosis and are receiving curative treatment OR are currently 0 to 10 years post-treatment.
Young adults between the ages of 15 to 39 years;
Able to read and understand English; and
Live in the United States.
18 years of age or older;
Able to read and understand English;
Live in the United States;
Have a child/ward/partner for whom they have provided care, AND
Their child/ward/partner is 15 to 25 years of age and meets the other eligibility criteria as an AYA participant with a cancer history (described above).

Exclusion

Diagnosed with basal cell skin cancer; or
Are currently receiving hospice care.
  • Refining of Item Pools - Development of Four Item BanksUp to study completion, up to approximately 2 years

    Upon completion of data analysis and study team review, investigators will have four unidimensional and locally independent, calibrated item banks: three for AYAs (body image, fertility, and financial burden) and one for caregivers (financial burden). In order to successfully calibrate an item bank, an n=500 is required per bank. In order to examine differential item functioning (DIF), a minimum n=200 per group is recommended. Our proposed sample sizes and specific subgroup accrual targets will be needed to calibrate multiple new item banks (body image, fertility, financial burden), evaluate DIF for various categories (age, gender, race, education) within our sample subgroups (AYAs with and without cancer), and to conduct confirmatory factor analysis (CFAs) on the item banks. In addition, the AYA sample the general population will serve as our reference to establish the mean and standard deviation for body image and fertility.