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

NCT ID: NCT06897137

Last Updated: 2025-12-18

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

NOT_YET_RECRUITING

Total Enrollment

3000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2026-01-31

Study Completion Date

2028-01-31

Brief Summary

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This study evaluates how adolescent and young adults with cancer in the U.S. and their loved ones respond to questions that will later be used with people who may have cancer and other chronic health conditions

Detailed Description

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PRIMARY OBJECTIVES:

* To refine patient-reported outcome assessment tools of body image, fertility, and financial burden for PROMIS and evaluate assumptions for IRT consistent with PROMIS Scientific Standards (e.g., unidimensionality, local independence).
* To examine item-level properties to support computer adaptive testing and evaluate possible differential item functioning (DIF).

Secondary Objective

* To create short forms and examine convergent validity of the new body image, fertility, and financial burden short forms and item banks with corresponding legacy measures of those constructs.

OUTLINE: This is an observational study.

Participants complete surveys on study.

Conditions

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Malignant Solid Neoplasm Hematopoietic Neoplasms Lymphatic System Neoplasm

Study Design

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Observational Model Type

CASE_CONTROL

Study Time Perspective

CROSS_SECTIONAL

Study Groups

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Observational

Participants will complete self-report questionnaires via Redcap. The questionnaires should take less than 30 minutes

Surveys/Questionnaires

Intervention Type OTHER

Participants will complete self-report questionnaires via Redcap. The questionnaires should take less than 30 minutes and will include the following options based on their relevance to each sample: 1) sociodemographic (including the comorbidity index) and clinical information, 2) newly developed item pools for body image, fertility, and financial burden, 3) legacy measures for body image, fertility, and financial burden, 4) the PROMIS AYA Health Status Profile, and 5) the PROMIS Global.

Interventions

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Surveys/Questionnaires

Participants will complete self-report questionnaires via Redcap. The questionnaires should take less than 30 minutes and will include the following options based on their relevance to each sample: 1) sociodemographic (including the comorbidity index) and clinical information, 2) newly developed item pools for body image, fertility, and financial burden, 3) legacy measures for body image, fertility, and financial burden, 4) the PROMIS AYA Health Status Profile, and 5) the PROMIS Global.

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* 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.

Caregivers of AYAs with cancer (AYA-Cg)


* 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 Criteria

* Diagnosed with basal cell skin cancer; or
* Are currently receiving hospice care.

AYAs General Population (AYA-GP)
Minimum Eligible Age

15 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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National Cancer Institute (NCI)

NIH

Sponsor Role collaborator

Wake Forest University Health Sciences

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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John Salsman

Role: PRINCIPAL_INVESTIGATOR

Wake Forest Baptist Comprehensive Cancer Center

Locations

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Wake Forest Baptist Comprehensive Cancer Center

Winston-Salem, North Carolina, United States

Site Status

Countries

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United States

Central Contacts

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Stephanie Bunch

Role: CONTACT

Phone: 3367165180

Email: [email protected]

Facility Contacts

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Stephanie Bunch

Role: primary

Other Identifiers

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R01CA218398

Identifier Type: NIH

Identifier Source: secondary_id

View Link

IRB00134827

Identifier Type: -

Identifier Source: org_study_id