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Desire for biological parenthood and patient counseling on the risk of infertility among adolescents and adults with hemoglobinopathies |
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| Authors: | Anne-Catherine Radauer-Plank Tamara Diesch-Furlanetto Monika Schneider Greta Sommerhäuser Lucía Alácan Friedrich Vivienne Salow Jill Dülberg Miriam Diepold Alicia Rovó Linet Muthoni Njue Beatrice Drexler Laura Infanti Sabine Kroiss Ramona Merki Katrin Scheinemann Bernhard Eisenreich Inga Hegemann Ljubica Mandic Leo Kager Anja Borgmann-Staudt Ralph Schilling Stephanie Roll Magdalena Balcerek |
| Affiliation: | 1. Department of Pediatric Oncology and Hematology, Charité-Universitätsmedizin Berlin, Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany;2. Division of Pediatric Hematology and Oncology, University Children's Hospital Basel, Basel, Switzerland;3. Department of Pediatrics, St. Anna Children's Hospital, Medical University Vienna, Vienna, Austria;4. Department of Pediatric Oncology and Hematology, Charité-Universitätsmedizin Berlin, Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany Department of Hematology, Oncology and Cancer Immunology (CVK/CCM), Charité-Universitätsmedizin Berlin, Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany;5. Department of Pediatric Hematology & Oncology, Inselspital, University Hospital Bern, Bern, Switzerland;6. Department of Hematology and Central Hematology Laboratory, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland;7. Department of Hematology, University Hospital Basel, Basel, Switzerland;8. Department of Pediatric Hematology and Oncology, Children's Hospital Zurich, Zurich, Switzerland;9. Department of Oncology, Hematology and Transfusion Medicine, Cantonal Hospital Aarau, Aarau, Switzerland;10. Division of Pediatric Oncology - Hematology, Department of Pediatrics, Kantonsspital Aarau AG, Aarau, Switzerland Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland Department of Pediatrics, McMaster Children's Hospital and McMaster University, Hamilton, Canada;11. Department of Pediatric Oncology and Hematology, Cantonal Hospital Lucerne, Lucerne, Switzerland;12. Department of Oncology and Hematology, University Hospital Zurich, Zurich, Switzerland;13. St. Anna Children's Cancer Research Institute, Vienna, Austria;14. Department of Pediatrics, St. Anna Children's Hospital, Medical University Vienna, Vienna, Austria St. Anna Children's Cancer Research Institute, Vienna, Austria;15. Institute of Social Medicine, Epidemiology and Health Economics, Charité-Universitätsmedizin Berlin, Freie Universität Berlin und Humboldt-Universität zu Berlin, Berlin, Germany |
| Abstract: | BackgroundBoth diagnosis and treatment of hemoglobinopathies have been associated with an increased risk of fertility impairment. German guidelines recommend annual monitoring of fertility parameters to enable early detection of fertility impairment and/or to offer fertility preservation (FP) when indicated. We explored the general desire for parenthood, the frequency of recalling fertility counseling and testing, and the utilization of FP in adolescents and adults with hemoglobinopathies.ProcedureIn a cross-sectional study, patients aged 12–50 years, treated in Germany, Austria, or Switzerland, were surveyed on fertility-related aspects. Medical data, including fertility testing results, were collected from patient records.ResultsOverall, 116/121 eligible patients, diagnosed with sickle cell disease (70.7%), thalassemia (27.6%), or other hemoglobinopathy (1.7%), participated in our study (57.8% female, median age 17.0 years, range 12–50 years). All participants required treatment of the underlying hemoglobinopathy: 68.1% received hydroxyurea, 25.9% required regular blood transfusions, and 6.0% underwent hematopoietic stem cell transplantation (HSCT). Most patients (82/108, 75.9%) stated a considerable to strong desire for (future) parenthood, independent of sex, education, diagnosis, or subjective health status. Fertility counseling was only recalled by 32/111 patients (28.8%) and least frequently by younger patients (12–16 years) or those treated with regular blood transfusions or hydroxyurea. While fertility testing was documented for 59.5% (69/116) in medical records, only 11.6% (13/112) recalled previous assessments. FP was only used by 5.4% (6/111) of patients.ConclusionMost patients with hemoglobinopathies wish to have biological children, yet only few recalled fertility counseling and testing. Adequate patient counseling should be offered to all patients at risk for infertility. |
| Keywords: | congenital anemias fertility impairment fertility preservation hemoglobinopathies parenthood patient counseling |