Long-term psychological distress in women at risk for hereditary breast cancer adhering to regular surveillance: a risk profile

Authors

  • Mariska den Heijer,

    Corresponding author
    1. Department of Clinical Genetics, Erasmus Medical Center, Rotterdam, The Netherlands
    • Department of Medical Psychology and Psychotherapy, Erasmus Medical Center, Rotterdam, The Netherlands
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  • Caroline Seynaeve,

    1. Family Cancer Clinic, Department of Medical Oncology, Erasmus MC-Daniel den Hoed Cancer Center, Rotterdam, The Netherlands
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  • Kathleen Vanheusden,

    1. Department of Medical Psychology and Psychotherapy, Erasmus Medical Center, Rotterdam, The Netherlands
    2. Department of Clinical Genetics, Erasmus Medical Center, Rotterdam, The Netherlands
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  • Reinier Timman,

    1. Department of Medical Psychology and Psychotherapy, Erasmus Medical Center, Rotterdam, The Netherlands
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  • Hugo J Duivenvoorden,

    1. Department of Medical Psychology and Psychotherapy, Erasmus Medical Center, Rotterdam, The Netherlands
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  • Madeleine Tilanus-Linthorst,

    1. Family Cancer Clinic, Department of Surgical Oncology, Erasmus MC-Daniel den Hoed Cancer Center, Rotterdam, The Netherlands
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  • Marian BE Menke-Pluijmers,

    1. Family Cancer Clinic, Department of Surgical Oncology, Erasmus MC-Daniel den Hoed Cancer Center, Rotterdam, The Netherlands
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  • Aad Tibben

    1. Department of Medical Psychology and Psychotherapy, Erasmus Medical Center, Rotterdam, The Netherlands
    2. Department of Clinical Genetics, Erasmus Medical Center, Rotterdam, The Netherlands
    3. Centre of Human and Clinical Genetics, Leiden University Medical Center, Leiden, The Netherlands
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Correspondence to: Department of Medical Psychology and Psychotherapy, Erasmus MC, P.O. Box 1738, 3000 DR, Rotterdam, The Netherlands. E-mail: m.denheijer@erasmusmc.nl

Abstract

Background

Some women at risk for hereditary breast cancer are at increased risk of psychological distress. In order to tailor support for individual women, the availability of a tool enabling the identification of psychologically vulnerable women at an early stage is warranted. The objectives of this study were (1) to explore long-term psychological distress in women at risk for hereditary breast cancer adhering to regular surveillance, and (2) to identify women being vulnerable for long-term psychological distress, defined in terms of a multifactorial risk profile.

Methods

General distress and cancer-related distress were assessed at baseline (T0) and after 5–8 years (T1) in 197 high-risk women adhering to breast cancer surveillance. Coping styles, occurrence of breast cancer in the family of origin, breast cancer risk perception, and frequency of breast self-examination, as assessed at T0, were examined as predictor variables for long-term distress (T1).

Results

Across time, women reported a significant reduction in intrusion and avoidance. Intrusion levels were increased among women who had lost a first-degree relative to breast cancer. Predictors of increased long-term distress were passive and palliative coping styles, excessive breast self-examination, and overestimation of breast cancer risk. On the other hand, coping through fostering reassuring thoughts was predictive for decreased long-term distress.

Conclusion

On the basis of the identified risk profile, it is possible to identify vulnerable women at an early stage, who then may be offered additional and individually tailored support. Copyright © 2012 John Wiley & Sons, Ltd.

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