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