Discussion
This cognitive interview study demonstrates that the PROMIS SexFS Brief
is an acceptable and useful too, demonstrating response process and
content validity, for screening for sexual dysfunction in adolescent and
young adult childhood cancer survivors as young as age 15. Most
participants in this study were in favor of using this tool to both
screen and facilitate conversations about SD in pediatric
oncology/survivorship settings. Participants largely reported that the
tool was comprehensive and relevant, and appreciated its detailed
questions even when a question generated discomfort. While a number of
additional questions were suggested by participants, there were no
questions felt to be missing by more than one participant. Questions
were clear and understandable, although occasional participants
advocated for more concrete response options. Importantly, these
findings did not appear to differ across age group or gender. As
previously mentioned, this is the first study to specifically evaluate
an SD screening tool in a youth population, both among general youth and
CCS.20,40 However, these findings are consistent with
studies in adult cancer survivor populations that demonstrate
reliability and validity of the PROMIS SexFS
Brief.21,22
In addition to demonstrating response process and content validity, use
of the SexFS Brief in a clinic setting was found not only be acceptable,
but useful and favored by participants. Participants indicated that the
PROMIS SexFS Brief would address an unmet need with regard to SD and
sexual health and would help them to think about their own concerns more
thoroughly. Additional research to understand AYA-CCS preferences for SD
screening, including evaluating AYA-CCS opinions on the benefits of the
use of a PRO tool in comparison to the current standard-of-care,
in-person conversations, are forthcoming. We are not aware of other
studies demonstrating patient-reported acceptability and usefulness of
an SD screening tool in this population. However, findings of this study
do support the Clinician Toolbox for assessing sexual impacts of cancer
among AYA that was published by Aubin, which suggest that use of an SD
PRO measure would facilitate conversations and reduce barriers to SD
screening.20
Numerous studies demonstrate that AYA-CCS report inadequate clinical
support for SD, highlighting the pressing need for improved detection
and treatment.13,14 Use of the SexFS Brief may help to
improve detection of SD by overcoming patient- and provider-identified
barriers such as lack of comfort, knowledge and
time.13-17 Additional studies are necessary to more
widely establish acceptability, usefulness, feasibility and
effectiveness of this screening tool at improving clinical care in the
AYA-CCS population, as well as in patients actively undergoing therapy.
This study has several limitations. While our sample size was consistent
with recommended guidelines and we purposefully sampled across age and
gender, not all subgroups could be analyzed. For example, additional
evaluation of acceptability and validity of this tool in patients at
higher risk for SD, such as patients with treatment-related gonadal
dysfunction, or patients treated with pelvic or central nervous system
radiation, may be warranted. Notably, however, participants were diverse
in terms of cancer diagnosis and treatment exposures, with one third of
patients being survivors of CNS tumors, who may have higher SD
risk.11 Further, nearly all patients were White,
non-Hispanic, and gender-conforming; our study was limited further in
that we did not collect data on sexual orientation. Along with this
homogeneity, we were unable to include CCS who were not cognitively able
to complete the screening tool or were not proficient in reading
English. Future work to address screening SD in these populations, as
well as to evaluate the SexFS Brief in more diverse subpopulations is
necessary. Further, while we did not collect reasons eligible patients
declined participation in the study, it is possible that there was some
self-selection bias such that patients more comfortable with SD may have
been more likely to participate; participant compensation was used to
help reduce this bias.
In summary, the PROMIS SexFS Brief was viewed favorably by AYA-CCS for
its potential in facilitating discussions and screening of SD between
survivors and medical professionals. Because the SexFS Brief has been
formally validated in adult cancer populations and demonstrated
acceptability as well as response process and content validity in our
subset of AYA-CCS, efforts should now focus on use in a clinical
setting. If effective at increasing detection, treatment and addressing
concerns of SD, use of the PROMIS SexFS Brief may ultimately result in
improved quality of care for this often-neglected quality of life
concern.
Conflicts of Interest
All other authors declare no competing financial interests.
Acknowledgements
This work was supported by the Pediatric Cancer Research Foundation
Emerging Investigator Fellowship fund and the University of Colorado
Cancer Center.
Data Sharing
The data that support the findings of this study are available from the
corresponding author upon reasonable request.
Correspondence: Jenna Sopfe, Center for Cancer and Blood Disorders,
Department of Pediatrics, University of Colorado School of Medicine,
13123 E. 16th Ave, B115, Aurora, Colorado, 80045;
email: jenna.sopfe@cuanschutz.edu