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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 (Oxford, England. 2018 Nov ; 103 () : 227-237. [epub] 20180929

Eur J Cancer
ISSN 1879-0852 | 0959-8049
Source

Language English Country England, Great Britain Media print-electronic

Document type Journal Article, Research Support, Non-U.S. Gov't

Persistent link https://www.medvik.cz/link/pmid30273888

PubMed 30273888
DOI 10.1016/j.ejca.2018.08.007
PII: S0959-8049(18)31119-5
Knihovny.cz E-resources

Keywords
Childhood cancer survivors, Gonadal impairment, Guidelines, Late effects, Ototoxicity, Quality of life,
MeSH
Child MeSH
Long-Term Care MeSH
Adult MeSH
Infant MeSH
Quality of Life psychology MeSH
Humans MeSH
Adolescent MeSH
Young Adult MeSH
Neoplasms MeSH
Infant, Newborn MeSH
Pilot Projects MeSH
Child, Preschool MeSH
Survivors MeSH
Feasibility Studies MeSH
Fertility Preservation MeSH
Check Tag
Child MeSH
Adult MeSH
Infant MeSH
Humans MeSH
Adolescent MeSH
Young Adult MeSH
Male MeSH
Infant, Newborn MeSH
Child, Preschool MeSH
Female MeSH
Publication type
Journal Article MeSH
Research Support, Non-U.S. Gov't MeSH
Geographicals
Europe MeSH

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.

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

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