Top

Published in:

19-08-2022 | Original Article

Disclosure of genetic risk to dating partners among young adults with von Hippel-Lindau disease

Authors: Elysa Bond, Beverly Yashar, Tobias Else, Jenae Osborne, Monica Marvin

Published in: Familial Cancer | Issue 2/2023

Abstract

Individuals with genetic disease face unique challenges related to navigating dating relationships. While previous studies have explored the impact of hereditary breast and ovarian cancer syndrome on dating, research investigating psychosocial implications for young adults with early-onset multi-organ tumor predisposition syndromes such as von Hippel-Lindau disease (VHL) is scarce. This study assessed young adults’ attitudes towards dating and decisions related to disclosing a diagnosis of VHL to a dating partner. Twenty-six young adults with VHL participated in semi-structured interviews exploring this issue, using a guide informed by the literature in consultation with providers and an individual with VHL. Interviews were coded with a primarily deductive approach using codes derived from the literature, with inductive coding employed for perspectives unique to VHL. Our results support previous findings that genetic disease contributes to fear of rejection due to decreased desirability. However, participants report that partners’ reactions to VHL uniquely exacerbate this concern due to unfamiliarity with VHL and a perception that it is exceptionally serious, leading to different strategies in disclosure. While many cited negative reactions from partners, participants also described how disclosure can strengthen relationships by deepening trust. Participants discussed a desire for healthcare providers to offer support in this context and described the benefit of speaking with peers about their dating experiences and approaches to disclosure. Our findings provide insight into the diverse needs of young adults with VHL as they approach romantic relationships and decision-making regarding disclosure and highlight the importance of patient-centered support from providers and patient organizations.

Available only for authorised users

Maher ER, Yates JR, Harries R, Benjamin C, Harris R, Moore AT, Ferguson-Smith MA (1990) Clinical features and natural history of von Hippel-Lindau disease. Q J Med 77(283):1151–1163. https://doi.org/10.1093/qjmed/77.2.1151CrossRefPubMed

Varshey N, Kebede AA, Owusu-Dapaah H, Lather J, Kaushik M, Bhullar JS (2017) A review of Von Hippel-Lindau syndrome. J Kidney Cancer VHL 4(3):20–29. https://doi.org/10.15586/jkcvhl.2017.88CrossRef

Jonasch E, Donskov F, Iliopoulos O, Rathmell K, Narayan VK, Maughan BL, Oudard S, Else T, Maranchie JK, Welsh SJ, Thamake S, Park EK, Perini RF, Marston Linehan W, Srinivasan R (2021) Belzutifan for renal cell carcinoma in von Hippel-Lindau disease. N Engl J Med 385:2036–2046. https://doi.org/10.1056/NEJMoa2103425CrossRefPubMedPubMedCentral

Kasparian NA, Rutstein A, Sansom-Daly U, Mireskandari S, Tyler J, Duffy J, Tucker KM (2015) Through the looking glass: an exploratory study of the lived experiences and unmet needs of families affected by von Hippel-Lindau disease. Eur J Hum Genet 23(1):34–40. https://doi.org/10.1038/ejhg.2014.44CrossRefPubMed

Forbes Shepherd R, Lewis A, Keogh LA, Werner-Lin A, Delatycki MB, Forrest LE (2018) A systematic review of how young people live with inherited disease: what can we learn for Li-Fraumeni syndrome? J Adolesc Young Adult Oncol 7(5):525–545. https://doi.org/10.1089/jayao.2018.0028CrossRefPubMed

Hoskins LM, Roy K, Peters JA, Loud JT, Greene MH (2008) Disclosure of positive BRCA1/2-mutation status in young couples: the journey from uncertainty to bonding through partner support. Fam Syst Health 26(3):296–316. https://doi.org/10.1037/a0012914CrossRefPubMedPubMedCentral

Klitzman RL, Sweeney MM (2011) “In sickness and in health”? Disclosures of genetic risks in dating. J Genet Couns 20(1):98–112. https://doi.org/10.1007/s10897-010-9331-zCrossRefPubMed

Broekema K, Weber KM (2017) Disclosures of cystic fibrosis-related information to romantic partners. Qual Health Res 27(10):1575–1585. https://doi.org/10.1177/1049732317697675CrossRefPubMed

Mireskandari S, Sangster J, Meiser B, Thewes B, Groombridge C, Spigelman A, Andrews L (2009) Psychosocial impact of familial adenomatous polyposis on young adults: a qualitative study. J Genet Couns 18(5):409–417. https://doi.org/10.1007/s10897-009-9231-2CrossRefPubMed

10.

Shaw LK, Sherman K, Fitness J (2015) Dating concerns among women with breast cancer or with genetic breast cancer susceptibility: a review and meta-synthesis. Health Psychol Rev 9(4):491–505. https://doi.org/10.1080/17437199.2015.1084891CrossRefPubMed

11.

Hamilton R, Hurley KE (2010) Conditions and consequences of a BRCA mutation in young, single women of child-bearing age. Oncol Nurs Forum 37:627–634. https://doi.org/10.1188/10.onf.627-634CrossRefPubMed

12.

Werner-Lin A (2008) Beating the biological clock: the compressed family life cycle of young women with BRCA gene alterations. Soc Work Health Care 47(4):416–437. https://doi.org/10.1080/00981380802173509CrossRefPubMed

13.

Hamilton R (2012) Being young, female, and BRCA positive. Am J Nurs 112:26–31. https://doi.org/10.1097/01.NAJ.0000421021.62295.3bCrossRefPubMed

14.

Kurowecki D, Fergus KD (2014) Wearing my heart on my chest: dating, new relationships, and the reconfiguration of self-esteem after breast cancer. Psychooncology 23:52–64. https://doi.org/10.1002/pon.3370CrossRefPubMed

15.

Werner-Lin A (2008) Formal and informal support needs of young women with BRCA mutations. J Psychosoc Oncol 26(4):111–133. https://doi.org/10.1080/07347330802359776CrossRefPubMed

16.

Lammens CR, Bleiker EM, Verhoef S, Hes FJ, Ausems MG, Majoor-Krakauer D, Sijmons RH, van der Luijt RB, van den Ouweland AM, Van Os TA, Hoogerbrugge N, Gómez García EB, Dommering CJ, Gundy CM, Aaronson NK (2010) Psychosocial impact of von Hippel-Lindau disease: levels and sources of distress. Clin Genet 77(5):483–491. https://doi.org/10.1111/j.1399-0004.2010.01333.xCrossRefPubMed

17.

Lammens CR, Bleiker EM, Verhoef S, Ausems MG, Majoor-Krakauer D, Sijmons RH, Hes FJ, Gómez-García EB, Van Os TA, Spruijt L, van der Luijt RB, van den Ouweland AM, Ruijs MW, Gundy C, Nagtegaal T, Aaronson NK (2011) Distress in partners of individuals diagnosed with or at high risk of developing tumors due to rare hereditary cancer syndromes. Psychooncology 20(6):631–638. https://doi.org/10.1002/pon.1951CrossRefPubMed

18.

Young JL, Pantaleao A, Zaspel L, Bayer J, Peters JA, Khincha PP, Brember RC, Loud JT, Greene MH, Achatz MI, Savage SA, Werner-Lin A (2019) Couples coping with screening burden and diagnostic uncertainty in Li-Fraumeni syndrome: connection versus independence. J Psychosoc Oncol 37(2):178–193. https://doi.org/10.1080/07347332.2018.1543376CrossRefPubMed

19.

Ernst ME, Sandberg DE, Keegan C, Quint EH, Lossie AC, Yashar BM (2016) The lived experience of MRKH: Sharing health information with peers. J Pediatr Adolesc Gynecol 29(2):154–158. https://doi.org/10.1016/j.jpag.2015.09.009CrossRefPubMed

Title: Disclosure of genetic risk to dating partners among young adults with von Hippel-Lindau disease
Authors: Elysa Bond
Beverly Yashar
Tobias Else
Jenae Osborne
Monica Marvin
Publication date: 19-08-2022
Publisher: Springer Netherlands
Published in: Familial Cancer / Issue 2/2023
Print ISSN: 1389-9600
Electronic ISSN: 1573-7292
DOI: https://doi.org/10.1007/s10689-022-00311-2

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

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Please log in to get access to this content

Other articles of this Issue 2/2023

Determinants of adherence to recommendations on physical activity, red and processed meat intake, and body weight among lynch syndrome patients

CDH1 mutations recurrence and global clustering in genetically tested families with hereditary diffuse gastric cancer syndrome: results from a systematic study

2022 CGA-IGC Annual Meeting: The collaborative group of the Americas on Inherited Gastrointestinal Cancer November 11–13, 2022

Analysis of uveal melanomas and paired constitutional DNA for exclusion of a BAP1-tumor predisposition syndrome

Characterization of sebaceous and non-sebaceous cutaneous manifestations in patients with lynch syndrome: a systematic review

Barriers to completion of cascade genetic testing: how can we improve the uptake of testing for hereditary breast and ovarian cancer syndrome?

Keynote webinar | Spotlight on antibody–drug conjugates in cancer