The psychological impact and experience of breast cancer screening in young women with an increased risk of breast cancer due to neurofibromatosis type 1

Ashley Crook*, Rebekah Kwa, Sarah Ephraums, Mathilda Wilding, Lavvina Thiyagarajan, Jane Fleming, Katrina Moore, Yemima Berman

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Women with neurofibromatosis type 1 (NF1) have an increased risk of developing early breast cancer with a poorer prognosis compared to the general population. Therefore, international management guidelines recommend regular screening in women with NF1 starting from 30 to 35 years. As the psychological impacts of breast cancer screening in other high-risk populations cannot be extended to women with NF1, due to increased incidence of cognitive and mental health issues, the psychological harms of breast screening in women with NF1 are unknown. Consequently, the aim of this study was to assess the psychological impact of breast cancer screening in women with NF1 attending an established risk management clinic. Twenty-eight women with NF1 (30–50 years) completed psychological well-being and patient experience questionnaires, administered across five time points, before and after their initial and second round annual breast screening visits. Preliminary findings demonstrated the screening regimen was well-tolerated, with most participants reporting high satisfaction with the screening process. Overall, no significant increase in psychological distress related to the breast screening process was identified, with mean cancer worry and anxiety scores decreasing over time. However, some women did experience negative aspects of screening and barriers to re-attendance at annual breast screening appointments. As some women with NF1 exhibited clinical levels of psychological distress prior to screening, efforts to identify those at risk and additional support to address concerns and expectations throughout the breast screening process may be beneficial.

Original languageEnglish
Number of pages13
JournalFamilial Cancer
Early online date8 May 2021
DOIs
Publication statusE-pub ahead of print - 8 May 2021
Externally publishedYes

Keywords

  • Breast cancer
  • Experience and barriers
  • Neurofibromatosis type 1
  • Psychosocial impact
  • Screening

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