Development of a questionnaire to evaluate female fertility care in pediatric oncology, a TREL initiative
van der Perk, M E Madeleine; Stukaitė-Ruibienė, Eglė; Bumbulienė, Žana; Vaitkevičienė, Goda Elizabeta; Bos, Annelies M E; van den Heuvel-Eibrink, Marry M; Rascon, Jelena
(2022) BMC Cancer, volume 22, issue 1
(Article)
Abstract
BACKGROUND: Currently the five-year survival of childhood cancer is up to 80% due to improved treatment modalities. However, the majority of childhood cancer survivors develop late effects including infertility. Survivors describe infertility as an important and life-altering late effect. Fertility preservation options are becoming available to pre- and postpubertal patients
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diagnosed with childhood cancer and fertility care is now an important aspect in cancer treatment. The use of fertility preservation options depends on the quality of counseling on this important and delicate issue. The aim of this manuscript is to present a questionnaire to determine the impact of fertility counseling in patients suffering from childhood cancer, to improve fertility care and evaluate what patients and their parents or guardians consider good fertility care. METHODS: Within the framework of the EU-Horizon 2020 TREL project, a fertility care evaluation questionnaire used in the Netherlands was made applicable for international multi-center use. The questionnaire to be used at least also in Lithuania, incorporates patients' views on fertility care to further improve the quality of fertility care and counseling. Results evaluate fertility care and will be used to improve current fertility care in a national specialized pediatric oncology center in the Netherlands and a pediatric oncology center in Lithuania. CONCLUSION: An oncofertility-care-evaluation questionnaire has been developed for pediatric oncology patients and their families specifically. Results of this questionnaire may contribute to enhancement of fertility care in pediatric oncology in wider settings and thus improve quality of life of childhood cancer patients and survivors.
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Keywords: Fertility care, Late effects, Pediatric cancer, Questionnaire, Reproductive health, Oncology, Genetics, Cancer Research
ISSN: 1471-2407
Publisher: BioMed Central
Note: Funding Information: The Twinning project TREL is a collaborative project, supported by the Horizon 2020 initiative of the European Commission. Funded by H2020-EU.4.b, Grant agreement ID: 952438. Project partners are: Vilnius University Hospital Santaros Klinikos, St Anna Kinderkrebsforschung Verein Austria, Universitaetsklinikum Hamburg-Eppendorf Germany, Region Hovedstaden Denmark, Prinses Máxima Centrum voor kinderoncologie The Netherlands, Instituto Giannina Gaslini Italy, Cineca Consorzio Interuniversitario Italy, Institut Gustave Roussy France, SIOP Europe ASBL Belgium. Funding Information: We are grateful to the staff from all research centers involved in this study and the TREL project. The Twinning project TREL is a collaborative project, supported by the Horizon 2020 initiative of the European Commission. Funded by H2020-EU.4.b, Grant agreement ID: 952438. Project partners are: Vilnius University Hospital Santaros Klinikos, St Anna Kinderkrebsforschung Verein Austria, Universitaetsklinikum Hamburg-Eppendorf Germany, Region Hovedstaden Denmark, Prinses M?xima Centrum voor kinderoncologie The Netherlands, Instituto Giannina Gaslini Italy, Cineca Consorzio Interuniversitario Italy, Institut Gustave Roussy France, SIOP Europe ASBL Belgium. Funding Information: This TREL project has received funding from the European Union’s Horizon 2020 research and innovation programme under the Grant Agreement No 952438. M.E.M. van der Perk was funded by the Pediatric Oncology Foundation Rotterdam (KOCR) and the Princess Máxima Foundation. Publisher Copyright: © 2022, The Author(s).
(Peer reviewed)
