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

Summary Problems of sexual function and fertility in long‐term survivors (≥5 years) 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% H odgkin, 45% non‐ H odgkin 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 ) 1·77, P  =   0·001]. Myeloablative therapy increased the likelihood of childlessness ( OR 2·48, P  =   0·004). 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 4·05, P  <   0·001; OR 5·05, P  <   0·001 respectively). Reporting a negative impact of cancer on sexual function was more common in women than men ( OR 2·20, P  <   0·001), and increased with current age and age at diagnosis (by 3–4% per year, P  ≤   0·001) but decreased with longer follow‐up (by 2%/year, P  =   0·005). Patients on anti‐depressants and those reporting cancer‐related body change/appearance concerns more frequently reported a negative impact ( P  <   0·04 and P  <   0·03 respectively). These self‐reported outcomes confirm literature findings, suggest improvement over time, but highlight a need for involvement of support services.