Purpose: 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. This is particularly true 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. Methods: 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 15-24 years of age. 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 modification to the SexFS Brief for this population. Conclusion: 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. Furthermore, 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 is warranted.
Keywords: AYA; late effects of cancer treatment; psychosocial; quality of life; sexual function; survivorship.