Evaluation of the v2.0 Brief Profiles for Sexual Function and
Satisfaction PROMIS® in adolescent and young adult childhood cancer
Background: Sexual dysfunction (SD) is a common but often unrecognized
potential late effect among childhood cancer survivors (CCS).
Unfortunately, both patients and providers report low levels of routine
screening and identify multiple barriers, including lack of knowledge,
discomfort, and limited time, particularly among CCS who are adolescent
or young adult aged (AYA-CCS). One potential way to increase screening,
detection and treatment for SD among AYA-CCS is to employ
patient-reported outcomes measures. While adult screening tools exist,
no SD screening tool has been evaluated specifically among this younger
population. Procedure: This qualitative study used Think-Aloud and
cognitive interviewing methods to obtain feedback from AYA-CCS on
acceptability, usefulness, and validity of the Patient-Reported Outcomes
Measurement Information System® (PROMIS®) v2.0 Brief Profiles for Sexual
Function and Satisfaction (SexFS Brief) in CCS now aged 15-24 years.
Results: The SexFS Brief demonstrated acceptability, response process
and content validity, and usefulness among AYA-CCS. There were no
detectable differences by age or gender. This study did not reveal any
necessary modifications to the SexFS Brief for this population.
Conclusions: The PROMIS SexFS Brief is an acceptable and useful tool,
with demonstrated response-process and content validity, and may
facilitate improved screening and diagnosis of SD among AYA-CCS.
Further, this tool was viewed favorably by AYA-CCS as a way to reduce
barriers such as discomfort and lack of knowledge on the part of
patients. Further evaluation of its effectiveness and acceptability in a
clinical setting are warranted.