Introduction
Sexual dysfunction (SD) is estimated to occur in 20-50% of childhood cancer survivors (CCS), but is widely underrecognized because SD screening rarely occurs.1-10 SD, which encompasses features such as lack of desire, failed arousal, or pain with sex, can occur in this population as a result of physiologic or psychosexual reasons, such as poor body image, concerns about fertility, and disruption of normal development.1,2,10-12 Both patients and providers report low levels of routine screening and acknowledge multiple barriers, including lack of knowledge, discomfort, and limited time.13-17 In one study, all adolescent and young adult-aged CCS reported inadequate clinical support and in another, only 2.9% of adult CCS experiencing SD had ever received an SD-directed intervention; as such, efforts to improve detection and treatment of SD are necessary.10,13,14
Given the sensitivity of this topic, screening tools, or patient-reported outcome (PRO) measures, may be particularly useful in CCS who are now adolescent or young adult-aged (hereinafter, AYA-CCS), who may be especially vulnerable to discomfort related to discussions of sexuality and sexualfunction.16,18-20 However, no SD-specific PROs have been specifically validated in the AYA general or AYA-CCS population.20 The Patient-Reported Outcomes Measurement Information System®(PROMIS®) v2.0 Brief Profiles for Sexual Function and Satisfaction (SexFS Brief) is a short, gender-specific PRO which has been validated in adult (mean age 58.5 years) cancer populations.9,21,22While these studies do demonstrate validity down to age 18, only 7% were <40 years old.
Emerging adulthood (age 15-25) or youthhood (age 15-24), is a period of transition, during which individuals may be more vulnerable or unique in their SD concerns.16,23,24 Arnett identified five features of this developmental stage: identify exploration, instability, self-focus, feeling in-between and possibilities/optimism.25 Because this is such a unique life stage, evaluating use of the SexFS Brief specifically in this population is warranted.
This qualitative study sought to evaluate novel use of the PROMIS SexFS Brief in adolescent CCS (<18 years), as well as to confirm acceptability, response process and content validity and usefulness specifically in emerging adult CCS (18-24 years).