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Discussing sexuality in cancer care: towards personalized information for cancer patients and survivors

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Abstract

Introduction

The needs of cancer patients and survivors regarding discussing sexuality are frequently unmet, with many not receiving adequate information. To optimize information about sexuality and cancer, patients’ perspective is needed. The goals of this study were to investigate what kind of information Dutch cancer patients need, their ideas on how to improve communication, and to identify patients who are more in need of information regarding sexuality.

Methods

The Dutch Federation of Cancer Patient Organizations developed and conducted a nationwide 28-item online survey. The survey was distributed among cancer patients and survivors.

Results

In total, 2657 (ex) cancer patients participated, with a median age of 61 years, and half were male (45.2%). Of the respondents, 65% were in need of information about sexuality. Patients ≤ 61 years (p < 0.001), patients with a self-reported negative effect of cancer on sexuality (p < 0.001) and patients who were diagnosed less than 2 years ago (p < 0.04) reported a higher need for information. Regardless of type of cancer, patients were most in need of practical tips and practical information regarding sexuality. To enhance communication about sexuality, 64% of the respondents suggested that it would be of help if care providers give information as standard care.

Conclusions

(Ex) cancer patient prefer to receive standard information about sexuality by their care providers. According to patients’ preferences, information must include practical tips. Age, self-reported negative effect on sexuality status and time from diagnoses influenced the need for information.

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Funding

This online survey was funded by a PGO-funding (funding for organizations for patients and disabled people) of the Ministry of Public Health, Welfare and Sport (VWS) of the Netherlands. The authors have no financial relationship with VWS.

Author information

Authors and Affiliations

  1. Department of Urology, Leiden University Medical Center, PO-box 9600, 2300, Leiden, WB, Netherlands

    Leonore F. Albers, Rob C.M. Pelger & Henk W. Elzevier

  2. Department of Medical Decision Making, Leiden University Medical Center, PO-box 9600, 2300, Leiden, WB, Netherlands

    Leonore F. Albers, Rob C.M. Pelger & Henk W. Elzevier

  3. Dutch Federation of Cancer Patient Organizations, Postbus 8152, 3503, Utrecht, RD, Netherlands

    Mirjam A. van Belzen, Christel van Batenburg & Vivian Engelen

  4. Department of Medical Statistics, Leiden University Medical Center, PO-box 9600, 2300, Leiden, WB, Netherlands

    H. Putter

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  1. Leonore F. Albers
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  2. Mirjam A. van Belzen
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  3. Christel van Batenburg
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  4. Vivian Engelen
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Correspondence to Leonore F. Albers.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

The Medical Ethics Committee of the LUMC was consulted in order to verify whether ethical approval was necessary. Since the survey was initiated by the NFK in such a manner that the respondents could not be identified and participation was anonymous and fully voluntarily, the Committee declared that no formal ethical approval was needed (protocol number G19.052).

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Albers, L.F., van Belzen, M.A., van Batenburg, C. et al. Discussing sexuality in cancer care: towards personalized information for cancer patients and survivors. Support Care Cancer 28, 4227–4233 (2020). https://doi.org/10.1007/s00520-019-05257-3

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  • DOI: https://doi.org/10.1007/s00520-019-05257-3

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