Skip to main content
Top
Published in: BMC Cancer 1/2020

01-12-2020 | Fertility | Study protocol

Sexual dysfunction and fertility-related distress in young adults with cancer over 5 years following diagnosis: study protocol of the Fex-Can Cohort study

Authors: L. Wettergren, L. Ljungman, C. Micaux Obol, L. E. Eriksson, C. Lampic

Published in: BMC Cancer | Issue 1/2020

Login to get access

Abstract

Background

There is a lack of firm knowledge regarding sexual problems and fertility-related distress in young adults following a diagnosis with cancer. Establishing such understanding is essential to identify patients in need of specific support and to develop cancer care accordingly. This study protocol describes the Fex-Can Cohort study, a population-based prospective cohort study investigating sexual dysfunction and fertility-related distress in young adults diagnosed with cancer in Sweden. The primary objective of the study is to determine the prevalence and predictors of sexual dysfunction and fertility-related distress following a cancer diagnosis in young adulthood compared to prevalence rates for the general population. Further aims are to investigate the trajectories of these issues over time, the co-existence between sexual dysfunction and fertility-related distress, and the relation between these issues and body image, anxiety and depression, health-related quality of life, self-efficacy related to sexuality and fertility, and fertility-related knowledge.

Methods

Participants in the Fex-Can Cohort will be identified via the Swedish National Quality Registries for Brain Tumors, Breast Cancer, Gynecological Oncology, Lymphoma, and Testicular Cancer. All patients diagnosed at the ages of 18–39, during a period of 18 months, will be invited to participate. Established instruments will be used to measure sexual function (PROMIS SexFS), fertility-related distress (RCAC), body image (BIS), anxiety and depression (HADS), and health-related quality of life (QLQ-C30); Self-efficacy and fertility-related knowledge will be assessed by study-specific measures. The survey will be administered to participants at baseline (approximately 1.5 year after diagnosis) and at 3 and 5 years post-diagnosis. Registry data will be used to collect clinical variables. A comparison group of 2000 young adults will be drawn from the Swedish population register (SPAR) and subsequently approached with the same measures as the cancer group.

Discussion

The study will determine the prevalence and predictors of sexual dysfunction and fertility-related distress in young men and women with cancer. The findings will form a basis for developing interventions to alleviate sexual problems and fertility-related distress in young adults with cancer in the short and long term.

Trial registration

This is an observational cohort study and clinical trial registration was therefore not obtained.
Literature
1.
go back to reference Fidler MM, Gupta S, Soerjomataram I, Ferlay J, Steliarova-Foucher E, Bray F. Cancer incidence and mortality among young adults aged 20-39 years worldwide in 2012: a population-based study. Lancet Oncol. 2017;18(12):1579–89.PubMed Fidler MM, Gupta S, Soerjomataram I, Ferlay J, Steliarova-Foucher E, Bray F. Cancer incidence and mortality among young adults aged 20-39 years worldwide in 2012: a population-based study. Lancet Oncol. 2017;18(12):1579–89.PubMed
2.
go back to reference Socialstyrelsen, Statistics on Cancer Incidence 2016. 2016. Socialstyrelsen, Statistics on Cancer Incidence 2016. 2016.
3.
go back to reference Zebrack B, Isaacson S. Psychosocial care of adolescent and young adult patients with cancer and survivors. J Clin Oncol. 2012;30(11):1221–6.PubMed Zebrack B, Isaacson S. Psychosocial care of adolescent and young adult patients with cancer and survivors. J Clin Oncol. 2012;30(11):1221–6.PubMed
4.
go back to reference Acquati C, Zebrack BJ, Faul AC, Embry L, Aguilar C, Block R, et al. Sexual functioning among young adult cancer patients: a 2-year longitudinal study. Cancer. 2018;124(2):398–405.PubMed Acquati C, Zebrack BJ, Faul AC, Embry L, Aguilar C, Block R, et al. Sexual functioning among young adult cancer patients: a 2-year longitudinal study. Cancer. 2018;124(2):398–405.PubMed
5.
go back to reference Wettergren L, Kent EE, Mitchell SA, Zebrack B, Lynch CF, Rubenstein MB, et al. Cancer negatively impacts on sexual function in adolescents and young adults: the AYA HOPE study. Psychooncology. 2017;26(10):1632–9.PubMed Wettergren L, Kent EE, Mitchell SA, Zebrack B, Lynch CF, Rubenstein MB, et al. Cancer negatively impacts on sexual function in adolescents and young adults: the AYA HOPE study. Psychooncology. 2017;26(10):1632–9.PubMed
6.
go back to reference Bober SL, Varela VS. Sexuality in adult cancer survivors: challenges and intervention. J Clin Oncol. 2012;30(30):3712–9.PubMed Bober SL, Varela VS. Sexuality in adult cancer survivors: challenges and intervention. J Clin Oncol. 2012;30(30):3712–9.PubMed
7.
go back to reference Ljungman L, Ahlgren J, Petersson LM, Flynn KE, Weinfurt K, Gorman JR, et al. Sexual dysfunction and reproductive concerns in young women with breast cancer: type, prevalence, and predictors of problems. Psychooncology. 2018;27(12):2770–7.PubMedPubMedCentral Ljungman L, Ahlgren J, Petersson LM, Flynn KE, Weinfurt K, Gorman JR, et al. Sexual dysfunction and reproductive concerns in young women with breast cancer: type, prevalence, and predictors of problems. Psychooncology. 2018;27(12):2770–7.PubMedPubMedCentral
8.
go back to reference Mutsch J, Friedrich M, Leuteritz K, Sender A, Geue K, Hilbert A, et al. Sexuality and cancer in adolescents and young adults - a comparison between reproductive cancer patients and patients with non-reproductive cancer. BMC Cancer. 2019;19(1):828.PubMedPubMedCentral Mutsch J, Friedrich M, Leuteritz K, Sender A, Geue K, Hilbert A, et al. Sexuality and cancer in adolescents and young adults - a comparison between reproductive cancer patients and patients with non-reproductive cancer. BMC Cancer. 2019;19(1):828.PubMedPubMedCentral
9.
go back to reference Arden-Close E, Eiser C, Pacey A. Sexual functioning in male survivors of lymphoma: a systematic review. J Sex Med. 2011;8(7):1833–40.PubMed Arden-Close E, Eiser C, Pacey A. Sexual functioning in male survivors of lymphoma: a systematic review. J Sex Med. 2011;8(7):1833–40.PubMed
10.
go back to reference Jankowska M. Sexual functioning of testicular cancer survivors and their partners - a review of literature. Rep Pract Oncol Radiother. 2011;17(1):54–62.PubMedPubMedCentral Jankowska M. Sexual functioning of testicular cancer survivors and their partners - a review of literature. Rep Pract Oncol Radiother. 2011;17(1):54–62.PubMedPubMedCentral
11.
go back to reference Ljungman L, Eriksson LE, Flynn KE, Gorman JR, Stahl O, Weinfurt K, et al. Sexual dysfunction and reproductive concerns in young men diagnosed with testicular Cancer: an observational study. J Sex Med. 2019;16(7):1049–59.PubMed Ljungman L, Eriksson LE, Flynn KE, Gorman JR, Stahl O, Weinfurt K, et al. Sexual dysfunction and reproductive concerns in young men diagnosed with testicular Cancer: an observational study. J Sex Med. 2019;16(7):1049–59.PubMed
12.
go back to reference Syrjala KL. Filling the gaps in knowledge and treatments for sexual health in young adult male cancer survivors. Cancer. 2016;122(14):2134–7.PubMed Syrjala KL. Filling the gaps in knowledge and treatments for sexual health in young adult male cancer survivors. Cancer. 2016;122(14):2134–7.PubMed
13.
go back to reference Ribi K, Luo W, Bernhard J, Francis PA, Burstein HJ, Ciruelos E, et al. Adjuvant Tamoxifen plus ovarian function suppression versus Tamoxifen alone in premenopausal women with early breast Cancer: patient-reported outcomes in the suppression of ovarian function trial. J Clin Oncol. 2016;34(14):1601–10.PubMedPubMedCentral Ribi K, Luo W, Bernhard J, Francis PA, Burstein HJ, Ciruelos E, et al. Adjuvant Tamoxifen plus ovarian function suppression versus Tamoxifen alone in premenopausal women with early breast Cancer: patient-reported outcomes in the suppression of ovarian function trial. J Clin Oncol. 2016;34(14):1601–10.PubMedPubMedCentral
14.
go back to reference Sadovsky R, Basson R, Krychman M, Morales AM, Schover L, Wang R, et al. Cancer and sexual problems. J Sex Med. 2010;7(1 Pt 2):349–73.PubMed Sadovsky R, Basson R, Krychman M, Morales AM, Schover L, Wang R, et al. Cancer and sexual problems. J Sex Med. 2010;7(1 Pt 2):349–73.PubMed
15.
go back to reference Vassilakopoulou M, Boostandoost E, Papaxoinis G, de La Motte RT, Khayat D, Psyrri A. Anticancer treatment and fertility: effect of therapeutic modalities on reproductive system and functions. Crit Rev Oncol Hematol. 2016;97:328–34.PubMed Vassilakopoulou M, Boostandoost E, Papaxoinis G, de La Motte RT, Khayat D, Psyrri A. Anticancer treatment and fertility: effect of therapeutic modalities on reproductive system and functions. Crit Rev Oncol Hematol. 2016;97:328–34.PubMed
16.
go back to reference Crawshaw M. Psychosocial oncofertility issues faced by adolescents and young adults over their lifetime: a review of the research. Hum Fertil (Camb). 2013;16(1):59–63. Crawshaw M. Psychosocial oncofertility issues faced by adolescents and young adults over their lifetime: a review of the research. Hum Fertil (Camb). 2013;16(1):59–63.
17.
go back to reference Fidler MM, Frobisher C, Hawkins MM, Nathan PC. Challenges and opportunities in the care of survivors of adolescent and young adult cancers. Pediatr Blood Cancer. 2019;66(6):e27668.PubMed Fidler MM, Frobisher C, Hawkins MM, Nathan PC. Challenges and opportunities in the care of survivors of adolescent and young adult cancers. Pediatr Blood Cancer. 2019;66(6):e27668.PubMed
18.
go back to reference Raghunathan NJ, Benedict C, Thom B, Friedman DN, Kelvin JF. Young adult female cancer survivors’ concerns about future children’s health and genetic risk. J Adolesc Young Adult Oncol. 2018;7(1):125–9. Raghunathan NJ, Benedict C, Thom B, Friedman DN, Kelvin JF. Young adult female cancer survivors’ concerns about future children’s health and genetic risk. J Adolesc Young Adult Oncol. 2018;7(1):125–9.
19.
go back to reference Gorman JR, Su HI, Roberts SC, Dominick SA, Malcarne VL. Experiencing reproductive concerns as a female cancer survivor is associated with depression. Cancer. 2015;121(6):935–42.PubMed Gorman JR, Su HI, Roberts SC, Dominick SA, Malcarne VL. Experiencing reproductive concerns as a female cancer survivor is associated with depression. Cancer. 2015;121(6):935–42.PubMed
20.
go back to reference Alexis O, Adeleye AO, Worsley AJ. Men’s experiences of surviving testicular cancer: an integrated literature review. J Cancer Surviv. 2020 14(3):284–93. Alexis O, Adeleye AO, Worsley AJ. Men’s experiences of surviving testicular cancer: an integrated literature review. J Cancer Surviv. 2020 14(3):284–93.
21.
go back to reference Carpentier MY, Fortenberry JD. Romantic and sexual relationships, body image, and fertility in adolescent and young adult testicular cancer survivors: a review of the literature. J Adolesc Health. 2010;47(2):115–25.PubMedPubMedCentral Carpentier MY, Fortenberry JD. Romantic and sexual relationships, body image, and fertility in adolescent and young adult testicular cancer survivors: a review of the literature. J Adolesc Health. 2010;47(2):115–25.PubMedPubMedCentral
22.
go back to reference Ussher JM, Perz J, Australien Cancer and Fertility Study Team (ACFST). Threat of biographical disruption: the gendered construction and experience of infertility following cancer for women and men. BMC Cancer. 2018;18(1):250. Ussher JM, Perz J, Australien Cancer and Fertility Study Team (ACFST). Threat of biographical disruption: the gendered construction and experience of infertility following cancer for women and men. BMC Cancer. 2018;18(1):250.
23.
go back to reference Lampic C, Ljungman L, Micaux Obol C, Eriksson LE, Wettergren L. A web-based psycho-educational intervention (Fex-can) targeting sexual dysfunction and fertility-related distress in young adults with cancer: study protocol of a randomized controlled trial. BMC Cancer. 2019;19(1):344.PubMedPubMedCentral Lampic C, Ljungman L, Micaux Obol C, Eriksson LE, Wettergren L. A web-based psycho-educational intervention (Fex-can) targeting sexual dysfunction and fertility-related distress in young adults with cancer: study protocol of a randomized controlled trial. BMC Cancer. 2019;19(1):344.PubMedPubMedCentral
24.
go back to reference Wiklander M, Strandquist J, Obol CM, Eriksson LE, Winterling J, Rodriguez-Wallberg KA, et al. Feasibility of a self-help web-based intervention targeting young cancer patients with sexual problems and fertility distress. Support Care Cancer. 2017;25(12):3675–82.PubMedPubMedCentral Wiklander M, Strandquist J, Obol CM, Eriksson LE, Winterling J, Rodriguez-Wallberg KA, et al. Feasibility of a self-help web-based intervention targeting young cancer patients with sexual problems and fertility distress. Support Care Cancer. 2017;25(12):3675–82.PubMedPubMedCentral
25.
go back to reference Winterling J, Wiklander M, Obol CM, Lampic C, Eriksson LE, Pelters B, et al. Development of a self-help web-based intervention targeting young cancer patients with sexual problems and fertility distress in collaboration with patient research partners. JMIR Res Protoc. 2016;5(2):e60. Winterling J, Wiklander M, Obol CM, Lampic C, Eriksson LE, Pelters B, et al. Development of a self-help web-based intervention targeting young cancer patients with sexual problems and fertility distress in collaboration with patient research partners. JMIR Res Protoc. 2016;5(2):e60.
26.
go back to reference Weinfurt KP, Lin L, Bruner DW, Cyranowski JM, Dombeck CB, Hahn EA, et al. Development and initial validation of the PROMIS((R)) sexual function and satisfaction measures version 2.0. J Sex Med. 2015;12(9):1961–74.PubMed Weinfurt KP, Lin L, Bruner DW, Cyranowski JM, Dombeck CB, Hahn EA, et al. Development and initial validation of the PROMIS((R)) sexual function and satisfaction measures version 2.0. J Sex Med. 2015;12(9):1961–74.PubMed
27.
go back to reference Flynn KE, Jeffery DD, Keefe FJ, Porter LS, Shelby RA, Fawzy MR, et al. Sexual functioning along the cancer continuum: focus group results from the patient-reported outcomes measurement information system (PROMIS (R)). Psychooncology. 2011;20(4):378–86. Flynn KE, Jeffery DD, Keefe FJ, Porter LS, Shelby RA, Fawzy MR, et al. Sexual functioning along the cancer continuum: focus group results from the patient-reported outcomes measurement information system (PROMIS (R)). Psychooncology. 2011;20(4):378–86.
28.
go back to reference PROMIS® Standards Committee. PROMIS® Instrument Development and Validation Scientific Standards Version 2.0. 2012 (revised May 2013). PROMIS® Standards Committee. PROMIS® Instrument Development and Validation Scientific Standards Version 2.0. 2012 (revised May 2013).
29.
go back to reference Gorman JR, Su HI, Pierce JP, Roberts SC, Dominick SA, Malcarne VL. A multidimensional scale to measure the reproductive concerns of young adult female cancer survivors. J Cancer Surviv. 2014;8(2):218–28.PubMed Gorman JR, Su HI, Pierce JP, Roberts SC, Dominick SA, Malcarne VL. A multidimensional scale to measure the reproductive concerns of young adult female cancer survivors. J Cancer Surviv. 2014;8(2):218–28.PubMed
31.
go back to reference Gorman JR, Pan-Weisz TM, Drizin JH, Su HI, Malcarne VL. Revisiting the reproductive concerns after Cancer (RCAC) scale. Psychooncology. 2019;28(7):1544–50.PubMedPubMedCentral Gorman JR, Pan-Weisz TM, Drizin JH, Su HI, Malcarne VL. Revisiting the reproductive concerns after Cancer (RCAC) scale. Psychooncology. 2019;28(7):1544–50.PubMedPubMedCentral
32.
go back to reference Hopwood P, Fletcher I, Lee A, Al Ghazal S. A body image scale for use with cancer patients. Eur J Cancer. 2001;37(2):189–97. Hopwood P, Fletcher I, Lee A, Al Ghazal S. A body image scale for use with cancer patients. Eur J Cancer. 2001;37(2):189–97.
33.
go back to reference Fingeret MC, Vidrine DJ, Reece GP, Gillenwater AM, Gritz ER. Multidimensional analysis of body image concerns among newly diagnosed patients with oral cavity cancer. Head Neck. 2010;32(3):301–9.PubMedPubMedCentral Fingeret MC, Vidrine DJ, Reece GP, Gillenwater AM, Gritz ER. Multidimensional analysis of body image concerns among newly diagnosed patients with oral cavity cancer. Head Neck. 2010;32(3):301–9.PubMedPubMedCentral
34.
go back to reference Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67(6):361–70.PubMed Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67(6):361–70.PubMed
35.
go back to reference Bjelland I, Dahl AA, Haug TT, Neckelmann D. The validity of the hospital anxiety and depression scale. An updated literature review. J Psychosom Res. 2002;52(2):69–77.PubMed Bjelland I, Dahl AA, Haug TT, Neckelmann D. The validity of the hospital anxiety and depression scale. An updated literature review. J Psychosom Res. 2002;52(2):69–77.PubMed
36.
go back to reference Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85(5):365–76.PubMed Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85(5):365–76.PubMed
37.
go back to reference Giesinger JM, Kieffer JM, Fayers PM, Groenvold M, Petersen MA, Scott NW, et al. Replication and validation of higher order models demonstrated that a summary score for the EORTC QLQ-C30 is robust. J Clin Epidemiol. 2016;69:79–88.PubMed Giesinger JM, Kieffer JM, Fayers PM, Groenvold M, Petersen MA, Scott NW, et al. Replication and validation of higher order models demonstrated that a summary score for the EORTC QLQ-C30 is robust. J Clin Epidemiol. 2016;69:79–88.PubMed
38.
go back to reference Shih CL, Chen CH, Sheu CF, Lang HC, Hsieh CL. Validating and improving the reliability of the EORTC qlq-c30 using a multidimensional Rasch model. Value Health. 2013;16(5):848–54.PubMed Shih CL, Chen CH, Sheu CF, Lang HC, Hsieh CL. Validating and improving the reliability of the EORTC qlq-c30 using a multidimensional Rasch model. Value Health. 2013;16(5):848–54.PubMed
39.
go back to reference Lammerink EAG, de Bock GH, Pascal A, van Beek AP, van den Bergh ACM, Sattler MGA, et al. A survey of female sexual functioning in the general Dutch population. J Sex Med. 2017;14(7):937–49.PubMed Lammerink EAG, de Bock GH, Pascal A, van Beek AP, van den Bergh ACM, Sattler MGA, et al. A survey of female sexual functioning in the general Dutch population. J Sex Med. 2017;14(7):937–49.PubMed
40.
go back to reference Bleyer A, Barr R. Cancer in young adults 20 to 39 years of age: overview. Semin Oncol. 2009;36(3):194–206.PubMed Bleyer A, Barr R. Cancer in young adults 20 to 39 years of age: overview. Semin Oncol. 2009;36(3):194–206.PubMed
41.
go back to reference Vittinghoff E, McCulloch CE. Relaxing the rule of ten events per variable in logistic and cox regression. Am J Epidemiol. 2007;165(6):710–8.PubMed Vittinghoff E, McCulloch CE. Relaxing the rule of ten events per variable in logistic and cox regression. Am J Epidemiol. 2007;165(6):710–8.PubMed
42.
go back to reference von Elm E, Altman DG, Egger M, Pocock SJ, Gotzsche PC, Vandenbroucke JP, et al. The strengthening the reporting of observational studies in epidemiology (STROBE) statement: guidelines for reporting observational studies. PLoS Med. 2007;4(10):e296. von Elm E, Altman DG, Egger M, Pocock SJ, Gotzsche PC, Vandenbroucke JP, et al. The strengthening the reporting of observational studies in epidemiology (STROBE) statement: guidelines for reporting observational studies. PLoS Med. 2007;4(10):e296.
43.
go back to reference Calvert M, Kyte D, Mercieca-Bebber R, Slade A, Chan AW, King MT, et al. Guidelines for inclusion of patient-reported outcomes in clinical trial protocols: the SPIRIT-PRO extension. JAMA. 2018;319(5):483–94.PubMed Calvert M, Kyte D, Mercieca-Bebber R, Slade A, Chan AW, King MT, et al. Guidelines for inclusion of patient-reported outcomes in clinical trial protocols: the SPIRIT-PRO extension. JAMA. 2018;319(5):483–94.PubMed
44.
go back to reference Emilsson L, Lindahl B, Koster M, Lambe M, Ludvigsson JF. Review of 103 Swedish healthcare quality registries. J Intern Med. 2015;277(1):94–136.PubMed Emilsson L, Lindahl B, Koster M, Lambe M, Ludvigsson JF. Review of 103 Swedish healthcare quality registries. J Intern Med. 2015;277(1):94–136.PubMed
45.
go back to reference Nicolosi A, Laumann EO, Glasser DB, Moreira ED Jr, Paik A, Gingell C, et al. Sexual behavior and sexual dysfunctions after age 40: the global study of sexual attitudes and behaviors. Urology. 2004;64(5):991–7.PubMed Nicolosi A, Laumann EO, Glasser DB, Moreira ED Jr, Paik A, Gingell C, et al. Sexual behavior and sexual dysfunctions after age 40: the global study of sexual attitudes and behaviors. Urology. 2004;64(5):991–7.PubMed
46.
go back to reference Rosen RC, Fisher WA, Eardley I, Niederberger C, Nadel A, Sand M, et al. The multinational men’s attitudes to life events and sexuality (MALES) study: I. prevalence of erectile dysfunction and related health concerns in the general population. Curr Med Res Opin. 2004;20(5):607–17. Rosen RC, Fisher WA, Eardley I, Niederberger C, Nadel A, Sand M, et al. The multinational men’s attitudes to life events and sexuality (MALES) study: I. prevalence of erectile dysfunction and related health concerns in the general population. Curr Med Res Opin. 2004;20(5):607–17.
Metadata
Title
Sexual dysfunction and fertility-related distress in young adults with cancer over 5 years following diagnosis: study protocol of the Fex-Can Cohort study
Authors
L. Wettergren
L. Ljungman
C. Micaux Obol
L. E. Eriksson
C. Lampic
Publication date
01-12-2020
Publisher
BioMed Central
Keyword
Fertility
Published in
BMC Cancer / Issue 1/2020
Electronic ISSN: 1471-2407
DOI
https://doi.org/10.1186/s12885-020-07175-8

Other articles of this Issue 1/2020

BMC Cancer 1/2020 Go to the issue
Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras
Prof. Fabrice Barlesi
Developed by: Springer Medicine