Eeltink, Cornelia Maria

English

Chapter 1 is the general introduction to this thesis. Sexuality is one of the domains that is negatively affected not only during treatment of a hematological malignancy (HM) but also following treatment. Health-care providers (HCPs) are often unaware of the sexual problems that patients experience. The aims of thesis were to obtain more knowledge on sexual (dys)function that HM survivors may face during and after treatment, how health-care providers address sexuality in clinical practice, and on the need on information among HM survivors. In the systematic review investigating the prevalence of various sexual problems (Chapter 2) we found 24 studies that met our criteria. Based on the few high quality studies, it is estimated that sexual problems occur in 18-50% of Acute Leukemia, Hodgkin lymphoma, and non-Hodgkin lymphoma patients. Chapter 3 concerned a cross-sectional study in which we compared self-reported sexual function of young female Hodgkin lymphoma (HL) patients with a normative population. We showed that 31% HL survivors reported a sexual dysfunction which is actually comparable to the general population. Patients who considered themselves as not being fertile more often (63%) reported sexual dysfunction (p=0.07). Chapter 4, concerned a cross-sectional study in which we compared self-reported sexual function of male HL patients with age matched controls. Moreover, we investigated whether reporting to perceive sexual problems was indicative for sexual dysfunction. The results showed that erectile dysfunction occurred in 23% of the HL survivors and controls. While none of the HL survivors who were treated with ABVD perceived sexual problems, one third of HL survivors who were treated with BEACOPP did. Importantly, we found that sexual dysfunction can be easily detected early by screening on sexual problems using 3 questions only. Chapter 5 described a literature review to provide insight into the perceived need for information of patients with haematological malignancies. Focusing on sexuality, this was addressed by four of the fourteen studies. Two of these studies reported that sexuality was of low priority while the other two studies reported that patients had a need for information about sexuality. Chapter 6 described a Letter to the Editor. We performed a multicenter longitudinal survey to measure the need for information among patients with HM and their intimate partners during the first 18 months of treatment. Over 18 months from diagnosis, range 40 to 48% of patients and 34-53% of partners expressed a need for information regarding sexuality. Chapter 7 described the results of the survey among the members of the European Society for Blood and Marrow Transplantation to evaluate the frequency and barriers and facilitators to discussing sexual issues. The study showed that one-third medical doctors (MDs) and registered nurses (RNs) routinely discussed sexual issues. The major perceived barriers were limited knowledge, feeling uncomfortable discussing sexual issues, the presence of a relative, and the preference of patients raising sexual issues themselves. Chapter 8 described the impact of HCT on sexuality, and briefly the management of sexual problems. For this, we extracted some of the findings of our systematic literature review (in relation to sexual function and HCT) (Chapter 2). In an effort to better meet the informational need of patients, a patient information sheet has been created. Chapter 9 summarizes the results of this thesis, from the studies that have been done so far, too little is known to describe the actual impact of HM on sexuality. Half of patients and their intimate partners need this information. The lack of knowledge about the long-term effects of treatment on sexuality among MDs and RNs prevents patients and their partners from getting the information they need

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Sexuality in patients with hematological malignancies: From a patient, partner and health- care professional perspective

https://research.vu.nl/files/156180317/C M  Eeltink - thesis.pdf

Sexuality in patients with hematological malignancies: From a patient, partner and health- care professional perspective

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