Fertility and sexual function in long-term survivors of haematological malignancy: using patient-reported outcome measures to assess a neglected area of need in the late effects clinic.

Problems of sexual function and fertility in long-term survivors (5years) of haematological malignancy are often neglected in clinic. Our centre carried out a questionnaire study in this population addressing patient-perceived fertility and sexual function. 718 patients responded (56% of those invited; 39% Hodgkin, 45% non-Hodgkin lymphoma, 16% acute leukaemia). Respondent women were more likely to remain childless than a normal control population. Self-reported infertility was more likely in men than women [odds ratio (OR) 177, P=0001]. Myeloablative therapy increased the likelihood of childlessness (OR 248, P=0004). Few attended fertility support services (12%). 24% of men banked sperm and 29% of these used the sample, of which 46% resulted in successful pregnancy. Fertility clinic attendance and sperm storage was more likely post-1990 (OR 405, P<0001; OR 505, P<0001 respectively). Reporting a negative impact of cancer on sexual function was more common in women than men (OR 220, P<0001), and increased with current age and age at diagnosis (by 3-4% per year, P0001) but decreased with longer follow-up (by 2%/year, P=0005). Patients on anti-depressants and those reporting cancer-related body change/appearance concerns more frequently reported a negative impact (P<004 and P<003 respectively). These self-reported outcomes confirm literature findings, suggest improvement over time, but highlight a need for involvement of support services.