PanCareLIFE: The scientific basis for a European project to improve long-term care regarding fertility, ototoxicity and health-related quality of life after cancer occurring among children and adolescents.

Byrne, Julianne; Grabow, Desiree; Campbell, Helen; O'Brien, Kylie; Bielack, Stefan; Am Zehnhoff-Dinnesen, Antoinette; Calaminus, Gabriele; Kremer, Leontien; Langer, Thorsten; van den Heuvel-Eibrink, Marry M; van Dulmen-den Broeder, Eline; Baust, Katja; Bautz, Andrea; Beck, Jörn D; Berger, Claire; Binder, Harald; Borgmann-Staudt, Anja; Broer, Linda; Cario, Holger; Casagranda, Leonie; ... (2018). PanCareLIFE: The scientific basis for a European project to improve long-term care regarding fertility, ototoxicity and health-related quality of life after cancer occurring among children and adolescents. European journal of cancer, 103, pp. 227-237. Elsevier 10.1016/j.ejca.2018.08.007

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AIMS Survival after cancer diagnosed during childhood or adolescence continues to improve with new treatments and supportive therapies. Optimal long-term care requires that risks to vulnerable organs are clearly defined and translated into guidelines that are implemented into practice. PanCareLIFE is a pan-European consortium that addresses survivorship issues comprising fertility, hearing impairment and quality of life. This article describes the scientific basis of PanCareLIFE's studies. METHODS PanCareLIFE involves 17 partner institutions from eight European countries, with additional 11 data providers from five other countries. Study designs and methods include molecular genetic, cohort and case-control studies, a longitudinal study and an intervention study. Ethics and data protection issues have been taken into account from the beginning. RESULTS PanCareLIFE will investigate the way that treatment impairs female fertility, by evaluating anti-Müllerian hormone levels and the underlying genetic susceptibility to loss of fertility. For our fertility studies, more than 6000 survivors have completed questionnaires, more than 1500 provided serum samples and more than 400 case-control triads have been identified. Fertility preservation guidelines for boys and girls will be developed. More than 2000 survivors have contributed audiograms for the ototoxicity study. Almost 1000 samples were sent for genetic analysis related to ototoxicity and gonadal reserve. The SF-36 questionnaire will measure quality of life in more than 10,000 survivors. CONCLUSIONS The large number of subjects enrolled in PanCareLIFE and the detailed information accumulated will allow in-depth evaluation of important outcomes. Fertility preservation guidelines will help patients and their families make informed decisions and contribute to their long-term well-being.

Item Type:

Journal Article (Original Article)

Division/Institute:

04 Faculty of Medicine > Pre-clinic Human Medicine > Institute of Social and Preventive Medicine

UniBE Contributor:

Kühni, Claudia and Kuonen, Rahel

Subjects:

600 Technology > 610 Medicine & health
300 Social sciences, sociology & anthropology > 360 Social problems & social services

ISSN:

0959-8049

Publisher:

Elsevier

Language:

English

Submitter:

Tanya Karrer

Date Deposited:

05 Oct 2018 11:16

Last Modified:

23 Oct 2019 21:53

Publisher DOI:

10.1016/j.ejca.2018.08.007

PubMed ID:

30273888

Uncontrolled Keywords:

Childhood cancer survivors Gonadal impairment Guidelines Late effects Ototoxicity Quality of life

BORIS DOI:

10.7892/boris.120320

URI:

https://boris.unibe.ch/id/eprint/120320

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