Measuring Health Related Quality of Life in AYAs

There are approximately 70,000 new diagnoses of cancer annually in adolescents and young
adults (AYAs; ages 15-39), and nearly 2 million people in the United States are living with
or have survived being diagnosed with cancer as an AYA. Despite the high number of AYA
survivors, survival rates of AYAs have not kept pace with those of their younger or older
counterparts. AYAs face unique challenges given the physical, cognitive, and psychosocial
developmental milestones that may be disrupted as a result of their cancer experience. In
addition to the age-related disparities in survival rates, AYAs are at greater risk of
significant psychological and financial distress compared to older adults with cancer.
Accordingly, assessing and better understanding the unique needs and health-related quality
of life (HRQOL) of this important, underserved group as they manage their cancer experience
is essential in order to optimize and tailor supportive care approaches.

A few HRQOL conceptual frameworks exist that describe the types of symptom burden and
functional impact experienced by AYAs with cancer, but most HRQOL measures fail to capture
the range of HRQOL domains that are important to AYAs. Further, measures of HRQOL
specifically developed for AYAs lack common items and standardized scoring approaches across
the age range of 15-39, limiting the ability to understand the unique needs of this age
group. The NIH's Patient-Reported Outcomes Measurement Information System (PROMIS) assesses
most of the relevant HRQOL domains (pain, fatigue, anxiety, depression, cognitive
functioning, physical functioning, sexual functioning, and social support) but has not been
validated in AYAs and PROMIS does not include key domains such as financial distress, body
image concerns, or fertility/ parenthood concerns that provide a complete perspective of
HRQOL in AYAs with cancer.

The main objective of the study is to expand the use of PROMIS to provide reliable and valid
assessment of important HRQOL concerns for AYAs. To accomplish this goal, the study team
propose the following specific aims: (1) develop item pools of financial distress, body image
concerns, and fertility/parenthood concerns for AYAs with cancer using PROMIS measurement
development methodologies; (2) calibrate item banks and short forms of financial distress,
body image concerns, and fertility/ parenthood concerns in a large, developmentally diverse
sample of AYAs with and without cancer; and (3) validate newly developed short forms of
financial distress, body image concerns, and fertility/ parenthood concerns along with
existing PROMIS short forms in a developmentally and clinically diverse, prospective sample
of AYAs with cancer.

At the end of this research study, the investigators will have a psychometrically robust,
state-of-the-art measurement system tailored to AYAs' unique HRQOL needs. Through the
identification, adaptation, and development of reliable, valid, and responsive measures of
HRQOL for AYAs with cancer, the investigators will give these underserved patients a voice
and provide the assessment tools clinicians and researchers need to enhance patient-centered
care.

Inclusion Criteria:

- 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

Exclusion Criteria:

- 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