Top

Supportive Care in Cancer

Published in:

Open Access 01-07-2018 | Original Article

Knowledge and perceptions of infertility in female cancer survivors and their parents

Authors: Taryn Sandheinrich, Sarah B. Wondmeneh, Caroline Mohrmann, Katie Gettinger, Jennifer Henry, Robert J. Hayashi

Published in: Supportive Care in Cancer | Issue 7/2018

Abstract

Purpose

The purpose of this study was to assess knowledge and perceptions of infertility, reproductive concerns, quality of life, and emotional burden of fertility concerns in adolescent female cancer survivors and their parents.

Methods

A cross-sectional design was used to investigate reproductive knowledge and concerns among female childhood cancer survivors and their parents. The instruments administered at a single, routine visit were the 13-item knowledge instrument, Adolescent Fertility Values Clarification Tool (VCT), Impact of Event Scale (IES), and Pediatrics Quality of Life Assessment (PedsQL). The knowledge instrument was given to both patients and caregivers, while the PedsQL and VCT were given to only patients and IES only to caregivers.

Results

Twenty-six survivors and 23 parents completed evaluations. The mean age of survivors was 16. The mean knowledge instrument score for survivors was 9.5 (± 1.9) and 9.96 (± 1.7) for parents with a maximum possible score of 13. The VCT indicated almost all patients agreed or strongly agreed they would like more information on how their treatment may affect their fertility, with 84.6% identified wanting a baby in the future. The mean survivor PedsQL score was 67.7 (± 15.3). While parental IES scores as whole did not endorse symptoms of PTSD, 30% of our sample did fall within the range for PTSD.

Conclusion

Although this population of women has above average knowledge scores, they still demonstrated a desire for more information on reproduction after cancer therapy. While PedsQL scores fell within a normal range, survivors report infertility would cause negative emotions.

Implication for cancer survivors

This information can be used refine educational programs within survivorship clinics to improve knowledge of post-treatment reproductive health.

Mariotto AB, Rowland JH, Yabroff KR, Scoppa S, Hachey M, Ries L, Feuer EJ (2009) Long-term survivors of childhood cancers in the United States. Cancer Epidemiol Biomark Amp Prev 18(4):1033–1040. https://doi.org/10.1158/1055-9965.EPI-08-0988 CrossRef

Burns KC, Boudreau C, Panepinto JA (2006) Attitudes regarding fertility preservation in female adolescent cancer patients. J Pediatr Hematol Oncol 28(6):350–354. https://doi.org/10.1097/00043426-200606000-00006 CrossRefPubMed

Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, Friedman DL, Marina N, Hobbie W, Kadan-Lottick NS, Schwartz CL, Leisenring W, Robison LL, Childhood Cancer Survivor Study (2006) Chronic health conditions in adult survivors of childhood cancer. N Engl J Med 355(15):1572–1582. https://doi.org/10.1056/NEJMsa060185 CrossRefPubMed

Barton SE, Najita JS, Ginsburg ES, Leisenring WM, Stovall M, Weathers RE, Sklar CA, Robison LL, Diller L (2013) Infertility, infertility treatment, and achievement of pregnancy in female survivors of childhood cancer: a report from the Childhood Cancer Survivor Study cohort. Lancet Oncol 14(9):873–881. https://doi.org/10.1016/S1470-2045(13)70251-1 CrossRefPubMed

Green DM, Kawashima T, Stovall M, Leisenring W, Sklar CA, Mertens AC, Donaldson SS, Byrne J, Robison LL (2009) Fertility of female survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol 27(16):2677–2685. https://doi.org/10.1200/JCO.2008.20.1541 CrossRefPubMedPubMedCentral

Oosterhuis BE, Goodwin T, Kiernan M, Hudson MM, Dahl GV (2008) Concerns about infertility risks among pediatric oncology patients and their parents. Pediatr Blood Cancer 50(1):85–89. https://doi.org/10.1002/pbc.21261 CrossRefPubMed

Connell S, Patterson C, Newman B (2006) Issues and concerns of young Australian women with breast cancer. Support Care Cancer 14(5):419–426. https://doi.org/10.1007/s00520-005-0003-8 CrossRefPubMed

Loren AW, Mangu PB, Beck LN, Brennan L, Magdalinski AJ, Partridge AH, Quinn G, Wallace WH, Oktay K, American Society of Clinical Oncology (2013) Fertility preservation for patients with cancer: American Society of Clinical Oncology clinical practice guideline update. J Clin Oncol Off J Am Soc Clin Oncol 31(19):2500–2510. https://doi.org/10.1200/JCO.2013.49.2678 CrossRef

Ginsberg JP (2011) New advances in fertility preservation for pediatric cancer patients. Curr Opin Pediatr 23(1):9–13. https://doi.org/10.1097/MOP.0b013e3283420fb6 CrossRefPubMedPubMedCentral

10.

Quinn GP, Vadaparampil ST (2009) Fertility preservation and adolescent/young adult cancer patients: physician communication challenges. J Adolesc Health 44(4):394–400. https://doi.org/10.1016/j.jadohealth.2008.08.014 CrossRefPubMed

11.

Quinn GP, Vadaparampil ST, Lee J-H, Jacobsen PB, Bepler G, Lancaster J, Keefe DL, Albrecht TL (2009) Physician referral for fertility preservation in oncology patients: a national study of practice behaviors. J Clin Oncol 27(35):5952–5957. https://doi.org/10.1200/JCO.2009.23.0250 CrossRefPubMed

12.

Peddie V, Porter M, Barbour R, Culligan D, MacDonald G, King D, Horn J, Bhattacharya S (2012) Factors affecting decision making about fertility preservation after cancer diagnosis: a qualitative study. BJOG Int J Obstet Gynaecol 119(9):1049–1057. https://doi.org/10.1111/j.1471-0528.2012.03368.x CrossRef

13.

Armuand GM, Rodriguez-Wallberg KA, Wettergren L, Ahlgren J, Enblad G, Höglund M, Lampic C (2012) Sex differences in fertility-related information received by young adult cancer survivors. J Clin Oncol 30(17):2147–2153. https://doi.org/10.1200/JCO.2011.40.6470 CrossRefPubMed

14.

Armuand GM, Wettergren L, Rodriguez-Wallberg KA, Lampic C (2015) Women more vulnerable than men when facing risk for treatment-induced infertility: a qualitative study of young adults newly diagnosed with cancer. Acta Oncol 54(2):243–252. https://doi.org/10.3109/0284186X.2014.948573 CrossRefPubMed

15.

Balthazar U, Fritz MA, Mersereau JE (2011) Fertility preservation: a pilot study to assess previsit patient knowledge quantitatively. Fertil Steril 95(6):1913–1916. https://doi.org/10.1016/j.fertnstert.2011.02.016 CrossRefPubMed

16.

Dyson GJ, Thompson K, Palmer S, Thomas DM, Schofield P (2012) The relationship between unmet needs and distress amongst young people with cancer. Support Care Cancer 20(1):75–85. https://doi.org/10.1007/s00520-010-1059-7 CrossRefPubMed

17.

Wenzel L, Dogan-Ates A, Habbal R, Berkowitz R, Goldstein DP, Bernstein M et al (2005) Defining and measuring reproductive concerns of female cancer survivors. JNCI Monogr 2005(34):94–98. https://doi.org/10.1093/jncimonographs/lgi017 CrossRef

18.

Quinn GP, Murphy D, Wang H, Sawczyn KK, Knapp C (2013) Healthy Adolescent Girls’ perceptions of cancer-related infertility having cancer doesn’t change wanting a baby: healthy adolescent girls’ perceptions of cancer-related infertility. J Adolesc Health Off Publ Soc Adolesc Med 52:164–169CrossRef

19.

Horowitz M, Wilner N, Alvarez W (1979) Impact of Event Scale: a measure of subjective stress. Psychosom Med 41(3):209–218. https://doi.org/10.1097/00006842-197905000-00004 CrossRefPubMed

20.

Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P (2002) The PedsQL™ in pediatric cancer. Cancer 94(7):2090–2106. https://doi.org/10.1002/cncr.10428 CrossRefPubMed

21.

D’Agostino NM, Edelstein K (2013) Psychosocial challenges and resource needs of young adult cancer survivors: implications for program development. J Psychosoc Oncol 31(6):585–600. https://doi.org/10.1080/07347332.2013.835018 CrossRefPubMed

22.

Knapp CA, Quinn GP, Murphy D (2011) Assessing the reproductive concerns of children and adolescents with cancer: challenges and potential solutions. J Adolesc Young Adult Oncol 1(1):31–35. https://doi.org/10.1089/jayao.2010.0003 CrossRefPubMedPubMedCentral

23.

Schover LR (1999) Psychosocial aspects of infertility and decisions about reproduction in young cancer survivors: a review. Med Pediatr Oncol 33(1):53–59. https://doi.org/10.1002/(SICI)1096-911X(199907)33:1<53::AID-MPO10>3.0.CO;2-K CrossRefPubMed

24.

Kazak A, Alderfer M, Rourke M, Simms S, Streisand R, Grossman J (2004) Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in families of adolescent childhood cancer survivors. J Pediatr Psychol 29(3):211–219. https://doi.org/10.1093/jpepsy/jsh022 CrossRefPubMed

25.

Landolt M, Vollrath M, Ribi K, Gnehm H, Sennhauser F (2003) Incidence and associations of parental and child posttraumatic stress symptoms in pediatric patients. J Child Psychol Psychiatry 44(8):1199–1207. https://doi.org/10.1111/1469-7610.00201 CrossRefPubMed

26.

Hudson M, Ness K, Gurney J, Mulrooney, Chemaitilly, Krull et al (2013) Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA 309(22):2371–2381. https://doi.org/10.1001/jama.2013.6296 CrossRefPubMedPubMedCentral

Title: Knowledge and perceptions of infertility in female cancer survivors and their parents
Authors: Taryn Sandheinrich
Sarah B. Wondmeneh
Caroline Mohrmann
Katie Gettinger
Jennifer Henry
Robert J. Hayashi
Publication date: 01-07-2018
Publisher: Springer Berlin Heidelberg
Published in: Supportive Care in Cancer / Issue 7/2018
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI: https://doi.org/10.1007/s00520-018-4080-x

Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Watch now

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

At a glance: The STEP trials

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusion

Implication for cancer survivors

Please log in to get access to this content

Other articles of this Issue 7/2018

Fertility information needs and concerns post-treatment contribute to lowered quality of life among young adult female cancer survivors

New frontier: cancer pain management clinical fellowship

Randomized double-blind clinical trial of combined treatment with megestrol acetate plus celecoxib versus megestrol acetate alone in cachexia-anorexia syndrome induced by GI cancers

Community-acquired respiratory infections are common in patients with non-Hodgkin lymphoma and multiple myeloma

Oral health impact profile of head and neck cancer patients after or before oncologic treatment: an observational analytic case-control study

Predictors of enrollment in individual- and couple-based lifestyle intervention trials for cancer survivors

Keynote webinar | Spotlight on antibody–drug conjugates in cancer