||5R01CA218398-03 Interpret this number
||Wake Forest University Health Sciences
||Optimizing Health Related Quality of Life Measurement in Adolescent and Young Adult Oncology: a Promising Solution
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 our study is to expand the use of PROMIS to provide reliable and valid assessment of
important HRQOL concerns for AYAs. To accomplish this goal, we 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, we 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, we will give these underserved patients a
voice and provide the assessment tools clinicians and researchers need to enhance patient-centered care.
Understanding, measuring, and addressing the financial impact of cancer on adolescents and young adults.
, Bingen K.
, Barr R.D.
, Freyer D.R.
Pediatric blood & cancer, 2019 07; 66(7), p. e27660.