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.
Keywords: Cancer care; Communication; Information needs; Sexual health; Sexuality.