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Evaluation of the v2.0 Brief Profiles for Sexual Function and Satisfaction PROMIS® in adolescent and young adult childhood cancer survivors
  • +4
  • Jenna Sopfe,
  • Rebekah Marsh,
  • Sonja Ziniel,
  • James Klosky,
  • Eric Chow,
  • Brooke Dorsey Holliman,
  • Pamela Peterson
Jenna Sopfe
University of Colorado Denver School of Medicine
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Rebekah Marsh
University of Colorado Denver School of Medicine
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Sonja Ziniel
University of Colorado Denver School of Medicine
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James Klosky
Emory Healthcare
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Eric Chow
Fred Hutchinson Cancer Research Center
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Brooke Dorsey Holliman
University of Colorado Denver School of Medicine
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Pamela Peterson
University of Colorado Denver School of Medicine
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Abstract

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.