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

Optimizing Health Related Quality of Life Measurement in Adolescent and Young Adult Oncology: A Promising Solution (PROMIS AYA) - Aim 2

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

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.

AYAs with a cancer history (AYA-C)

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.

Exclusion Criteria:

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

AYAs General Population (AYA-GP)

Inclusion Criteria:

• 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)

Inclusion Criteria:

• 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).