Evaluation of the v2.0 brief profiles for sexual function and satisfaction PROMIS in adolescent and young adult childhood cancer survivors
Open accessPublished version of a preprint
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.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
The PROMIS SexFS has shown satisfactory validity and reliability.
“The SexFS has shown satisfactory validity and reliability (Sopfe et al., 2021; Weinfurt et al., 2015).”
From Efficacy of a web-based psychoeducational intervention, Fex-can sex, for young adult childhood cancer survivors with sexual dysfunction: A randomized controlled trial (2024) · cites this paper as Sopfe et al., 2021
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009) · Journal of Biomedical Informatics · doi:10.1016/j.jbi.2008.08.010 · Cited by 51,384 · see citing works
Three Approaches to Qualitative Content Analysis
Hsieh, H.-F., & Shannon, S. E. (2005) · Qualitative Health Research · doi:10.1177/1049732305276687 · Cited by 44,601 · see citing works
How Many Interviews Are Enough?: An Experiment with Data Saturation and Variability
Guest, G., Bunce, A., & Johnson, L. (2006) · Field Methods · doi:10.1177/1525822x05279903 · Cited by 20,808 · see citing works
Sexual Dysfunction in the United States: Prevalence and Predictors
Laumann, E. O., Paik, A., & Rosen, R. C. (1999) · JAMA · doi:10.1001/jama.281.6.537 · Cited by 5,119 · see citing works
Cognitive Interviewing: A Tool for Improving Questionnaire Design
Willis, G. (2004) · Cited by 1,934 · see citing works
Patrick, D. L., Burke, L. B., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., & Ring, L. (2011) · Value in Health · doi:10.1016/j.jval.2011.06.013 · Cited by 1,135 · see citing works
The Think Aloud Method: A Practical Guide to Modelling Cognitive Processes
van Someren, M. (1994) · Cited by 975 · see citing works
Willis, G., & Artino, A. R. (2013) · Journal of Graduate Medical Education · doi:10.4300/jgme-d-13-00154.1 · Cited by 691 · see citing works
and the AYA HOPE Study Collaborative Group, Keegan, T. H. M., Lichtensztajn, D. Y., Kato, I., Kent, E. E., Wu, X.-C., West, M. M., Hamilton, A. S., Zebrack, B., Bellizzi, K. M., et al. (2012) · Journal of Cancer Survivorship · doi:10.1007/s11764-012-0219-9 · Cited by 347 · see citing works
Peterson, C. H., Peterson, N. A., & Powell, K. G. (2017) · Measurement and Evaluation in Counseling and Development · doi:10.1080/07481756.2017.1339564 · Cited by 336 · see citing works
Weinfurt, K. P., Lin, L., Bruner, D. W., Cyranowski, J. M., Dombeck, C. B., Hahn, E. A., Jeffery, D. D., Luecht, R. M., Magasi, S., Porter, L. S., et al. (2015) · The Journal of Sexual Medicine · doi:10.1111/jsm.12966 · Cited by 196 · see citing works
Development of the NIH PROMIS® Sexual Function and Satisfaction Measures in Patients with Cancer
Flynn, K. E., Lin, L., Cyranowski, J. M., Reeve, B. B., Reese, J. B., Jeffery, D. D., Smith, A. W., Porter, L. S., Dombeck, C., Bruner, D. W., et al. (2013) · The Journal of Sexual Medicine · doi:10.1111/j.1743-6109.2012.02995.x · Cited by 180 · see citing works
Sexual functioning in young adult survivors of childhood cancer
Zebrack, B. J., Foley, S., Wittmann, D., & Leonard, M. (2010) · Psycho-Oncology · doi:10.1002/pon.1641 · Cited by 144 · see citing works
Psychosexual functioning of childhood cancer survivors
van Dijk‐Lokkart, E. M., Broeder, E. V. D., Kaspers, G. J. L., van Dam, E. W. C. M., Braam, K. I., & Huisman, J. (2007) · Psycho-Oncology · doi:10.1002/pon.1274 · Cited by 137 · see citing works
Cancer negatively impacts on sexual function in adolescents and young adults: The AYA HOPE study
Wettergren, L., Kent, E. E., Mitchell, S. A., Zebrack, B., Lynch, C. F., Rubenstein, M. B., Keegan, T. H. M., Wu, X., Parsons, H. M., Smith, A. W., et al. (2016) · Psycho-Oncology · doi:10.1002/pon.4181 · Cited by 127 · see citing works
Frederick, N. N., Campbell, K. M., Kenney, L. B., Moss, K., Speckhart, A., & Bober, S. L. (2018) · Pediatric Blood & Cancer · doi:10.1002/pbc.27087 · Cited by 107 · see citing works
Sexual Function in Childhood Cancer Survivors: A Report from Project REACH
Bober, S. L., Zhou, E. S., Chen, B., Manley, P. E., Kenney, L. B., & Recklitis, C. J. (2013) · The Journal of Sexual Medicine · doi:10.1111/jsm.12193 · Cited by 106 · see citing works
Stinson, J., Jibb, L., Greenberg, M., Barrera, M. E., Luca, S., White, M. E., & Gupta, A. A. (2015) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2014.0036 · Cited by 89 · see citing works
van Oort, L., Schröder, C. D., & French, D. (2010) · British Journal of Health Psychology · doi:10.1348/135910710x500819 · Cited by 85 · see citing works
Sexual Dysfunction in Young Adult Survivors of Childhood Cancer
Frederick, N. N., Recklitis, C. J., Blackmon, J. E., & Bober, S. L. (2016) · Pediatric Blood & Cancer · doi:10.1002/pbc.26041 · Cited by 85 · see citing works
Sexual quality of life in men and women after cancer
Schover, L. R. (2018) · Climacteric · doi:10.1080/13697137.2018.1526893 · Cited by 84 · see citing works
Ford, J. S., Kawashima, T. I., Whitton, J. A., Leisenring, W. M., Laverdière, C., Stovall, M., Zeltzer, L. K., Robison, L. L., & Sklar, C. A. (2014) · Journal of Clinical Oncology · doi:10.1200/jco.2013.54.1086 · Cited by 83 · see citing works
Reeve, B. B., McFatrich, M., Pinheiro, L. C., Weaver, M. S., Sung, L., Withycombe, J. S., Baker, J. N., Mack, J. W., Waldron, M. K., Gibson, D. V., et al. (2016) · Pediatric Blood & Cancer · doi:10.1002/pbc.26261 · Cited by 73 · see citing works
Sexual function and experience among long-term survivors of childhood cancer
Sundberg, K. K., Lampic, C., Arvidson, J., Helström, L., & Wettergren, L. (2010) · European Journal of Cancer · doi:10.1016/j.ejca.2010.09.040 · Cited by 61 · see citing works
General Internist Communication about Sexual Function with Cancer Survivors
Park, E. R., Bober, S. L., Campbell, E. G., Recklitis, C. J., Kutner, J. S., & Diller, L. (2009) · Journal of General Internal Medicine · doi:10.1007/s11606-009-1026-5 · Cited by 61 · see citing works
Frederick, N. N., Revette, A. C., Michaud, A. L., & Bober, S. L. (2019) · Pediatric Blood & Cancer · doi:10.1002/pbc.27673 · Cited by 59 · see citing works
Reeve, B. B., McFatrich, M., Pinheiro, L. C., Freyer, D. R., Basch, E., Baker, J. N., Withycombe, J. S., Sung, L., Mack, J. W., Waldron, M. K., et al. (2017) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2016.11.006 · Cited by 54 · see citing works
Construct validity of the PROMIS® sexual function and satisfaction measures in patients with cancer
Flynn, K. E., Reeve, B. B., Lin, L., Cyranowski, J. M., Bruner, D. W., & Weinfurt, K. P. (2013) · Health and Quality of Life Outcomes · doi:10.1186/1477-7525-11-40 · Cited by 53 · see citing works
Ritenour, C. W. M., Seidel, K. D., Leisenring, W. M., Mertens, A. C., Wasilewski‐Masker, K. J., Shnorhavorian, M., Sklar, C. A., Whitton, J. A., Stovall, M., Constine, L. S., et al. (2016) · The Journal of Sexual Medicine · doi:10.1016/j.jsxm.2016.03.367 · Cited by 53 · see citing works
Sexual function in male long‐term survivors of childhood acute lymphoblastic leukemia
Haavisto, A., HENRIKSSON, M. M., Heikkinen, R., Puukko‐Viertomies, L., & Jahnukainen, K. (2016) · Cancer · doi:10.1002/cncr.29989 · Cited by 41 · see citing works
Aubin, S., & Perez, S. (2015) · Sexual Medicine · doi:10.1002/sm2.75 · Cited by 37 · see citing works
Sopfe, J., Gupta, A. A., Appiah, L. A., Chow, E. J., & Peterson, P. N. (2020) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2020.0025 · Cited by 35 · see citing works
Self-citationAujla, N., Vedhara, K., Walker, M. F., & Sprigg, N. (2018) · Journal of Health Psychology · doi:10.1177/1359105318781942 · Cited by 26 · see citing works
McCorry, N., Scullion, L., McMurray, C. M., Houghton, R., & Dempster, M. (2012) · Psychology and Health · doi:10.1080/08870446.2012.746690 · Cited by 25 · see citing works
Erectile Dysfunction in Male Survivors of Childhood Cancer
van Iersel, L., Li, Z., Chemaitilly, W., Schover, L. R., Ness, K. K., Hudson, M. M., & Klosky, J. L. (2018) · JAMA Oncology · doi:10.1001/jamaoncol.2018.4420 · Cited by 21 · see citing works
Self-citationKamp, K., Wyatt, G. K., Dudley-Brown, S. L., Brittain, K., & Given, B. A. (2018) · Applied Nursing Research · doi:10.1016/j.apnr.2018.06.007 · Cited by 17 · see citing works
Flagged first, then by citations
2 of the 38 references couldn’t be matched to a known paper.
Research works printed but not linked: 3
- Arnett JJ. Emerging adulthood : the winding road from the late teens through the twenties. New York ; Oxford: Oxford University Press; 2004.
- Posted on Authorea 11 Sep 2020 -The copyright holder is the author/funder. All rights reserved. No reuse without permission. -https://doi.org/10.22541/au.159985354.44719412 -This a preprint and has not been peer reviewed. Data may be preliminary. · DOI
- Tourangeau R, Rips LJ, Rasinski KA. The psychology of survey response. Cambridge, U.K. ; New York: Cambridge University Press; 2000.
Cited by
Sorted by citations
Sexual dysfunction in young adult survivors of childhood cancer - a population-based study
Hovén, E., Fagerkvist, K., Jahnukainen, K., Ljungman, L., Lähteenmäki, P. M., Axelsson, O., Lampic, C., & Wettergren, L. (2021) · European Journal of Cancer · doi:10.1016/j.ejca.2021.06.014 · Cited by 37 · see citing works
Psychosexual Care of Adolescent and Young Adult (AYA) Cancer Survivors
Reinman, L., Coons, H. L., Sopfe, J., & Casey, R. L. (2021) · Children · doi:10.3390/children8111058 · Cited by 31 · see citing works
Self-citationSopfe, J., Marsh, R., Frederick, N. N., Klosky, J. L., Chow, E. J., Holliman, B. D., & Peterson, P. N. (2021) · Pediatric Blood & Cancer · doi:10.1002/pbc.29229 · Cited by 16 · see citing works
Self-citationAcquati, C., Wittmann, D. A., Roth, M. E., Rosen, A., Carr, L. C., Gresham, Z., & Ionescu, E. (2023) · JMIR Research Protocols · doi:10.2196/41831 · Cited by 12 · see citing works
Fagerkvist, K., Jahnukainen, K., Ljungman, L., Lampic, C., & Wettergren, L. (2024) · Internet Interventions · doi:10.1016/j.invent.2024.100739 · Cited by 8 · see citing works
“The SexFS has shown satisfactory validity and reliability (Sopfe et al., 2021; Weinfurt et al., 2015).”
BackgroundA COSMIN Systematic Review of Sexual Health Literacy Self-Report Measures for Adolescents
Muehlmann, M., Nieradt, K., & Tomczyk, S. (2025) · Archives of Sexual Behavior · doi:10.1007/s10508-025-03142-1 · Cited by 4 · see citing works
Kuiper, S. T., Zweers, D., Suelmann, B. B. M., Meijer, R. P., & Vervoort, S. C. J. M. (2024) · Cancers · doi:10.3390/cancers16040715 · Cited by 4 · see citing works
Demedis, J., Reedy, J., Chow, E. J., Holliman, B. D., Peterson, P. N., & Studts, C. R. (2024) · Pediatric Blood & Cancer · doi:10.1002/pbc.30872 · Cited by 3 · see citing works
Self-citationChambers, R. L., Hocaoğlu, M., Higginson, I. J., Sleeman, K. E., & Fraser, L. (2025) · Palliative Medicine · doi:10.1177/02692163251340175 · Cited by 3 · see citing works
Demedis, J., Reedy, J., Miller, K. R., Hu, J., Klosky, J. L., Holliman, B. D., Peterson, P. N., Chow, E. J., & Studts, C. R. (2024) · PLoS ONE · doi:10.1371/journal.pone.0305677 · Cited by 2 · see citing works
Self-citationDadalyan, G. V., Saakyan, A. A., Adamova, S. D., Alimkhanova, K. K., Aidaeva, B. A., Magomedova, N. M., Kabdegalieva, A. R., Besheeva, R. A., Osmanov, D., Ersmurzaeva, I. Z., et al. (2025) · Obstetrics Gynecology and Reproduction · doi:10.17749/2313-7347/ob.gyn.rep.2025.643 · Cited by 2 · see citing works
Demedis, J., Bingen, K. M., Cherven, B. O., Frederick, N. N., Freyer, D. R., Levine, J. M., Bhutada, J. S., Quinn, G. P., Bober, S. L., & DuVall, A. S. (2024) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2023.0115
Demedis, J., Reedy, J., Chow, E. J., Peterson, P. N., Holliman, B. D., & Studts, C. R. (2026) · JMIR Formative Research · doi:10.2196/85905
Self-citationTerlinden, V., Aires-González, M.-D.-M., & Cano‐García, F. J. (2026) · Psycho-Oncology · doi:10.1002/pon.70516 · Cited by 1 · see citing works
- Authors
- Sopfe, J., Marsh, R., Ziniel, S. I., Klosky, J. L., Chow, E. J., Dorsey Holliman, B., & Peterson, P. N.
- Affiliations
- University of Colorado Anschutz (US)
- Emory University (US)
- Fred Hutch Cancer Center (US)
- Adult & Child Consortium for Health Outcomes Research & Delivery Science (ACCORDS), University of Colorado School of Medicine, Aurora, Colorado, USA.
- Denver Health Medical Center (US)
- Corresponding author
- Sopfe, Jenna
- Venue
- Journal of Adolescent and Young Adult Oncology
- Publisher
- SAGE Publications
- Published
- 2021-08-01
- Volume
- 10
- Issue
- 4
- Pages
- 418-424
- ISSN
- 2156-5333 (ISSN-L)
- 2156-535X
- OpenAlex
- W3095670432
- Cited by
- 15
- References
- 38
- Citations by year
- 2026: 2 · 2025: 3 · 2024: 5 · 2023: 1 · 2021: 3 · 2020: 1
- FWCI
- 1.20
- Type
- journal article
- Language
- en
- Open access
- green
- doi.org
- Locations
- Journal of Adolescent and Young Adult Oncology (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Pediatric Cancer Research Foundation
- Cancer Center, University of Colorado
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Medicine › Psychiatry and Mental health › Sexual function and dysfunction studies
- Keywords
- sexual dysfunction, childhood cancer survivors, adolescent and young adult cancer survivors, PROMIS, sexual function, sexual satisfaction, patient-reported outcomes, sexual dysfunction screening, acceptability, cognitive interviewing, think-aloud
- MeSH terms
- Patient Reported Outcome Measures, Cancer Survivors, Adolescent, Child, Humans, Neoplasms, Personal Satisfaction, Sexual Dysfunction, Physiological, Young Adult
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
