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).