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Health-Related Quality of Life in European Childhood Cancer Survivors: Protocol for a Study Within PanCareLIFE

Authors :
Calaminus, Gabriele
Baust, Katja
Berger, Claire
Byrne, Julianne
Binder, Harald
Casagranda, Leonie
Grabow, Desiree
Grootenhuis, Martha
Kaatsch, Peter
Kaiser, Melanie
Kepak, Tomas
Kepáková, Kateřina
Kremer, Leontien C M
Kruseova, Jarmila
Luks, Ales
Spix, Claudia
van den Berg, Marleen
van den Heuvel-Eibrink, Marry M M
van Dulmen-den Broeder, Eline
Kuonen, Rahel
Sommer, Grit
Kuehni, Claudia
Source :
JMIR Research Protocols, Vol 10, Iss 1, p e21851 (2021)
Publication Year :
2021
Publisher :
JMIR Publications, 2021.

Abstract

BackgroundSurvival after childhood cancer has improved to more than 80% during the last few years, leading to an increased number of childhood cancer survivors. Cancer itself, or its treatment, may cause chronic health conditions, including somatic and mental sequelae, which may affect survivors’ health-related quality of life (HRQoL). ObjectiveThe project PanCareLIFE aims to establish a large database with comprehensive data on childhood cancer survivors from different European countries, including data on HRQoL. Within PanCareLIFE, this study aims to describe HRQoL in survivors, investigate predictors of HRQoL, and describe the association of HRQoL with hearing and female fertility impairment. This paper describes the design of the HRQoL study, the origin of data, strategies for data collection, and sampling characteristics of survivors from each contributing country. MethodsA total of 6 institutions from 5 European countries (the Czech Republic, France, Germany, the Netherlands, and Switzerland) provided data on HRQoL assessed with the Short Form 36 and on relevant predictors. The central PanCareLIFE data center aggregated the data and harmonized the variables between the institutions. Survivors were eligible if they received a diagnosis of cancer according to the 12 main groups of the International Classification of Childhood Cancer, 3rd edition, or Langerhans cell histiocytosis; were aged ≤18 years at the time of diagnosis; were residents of the respective country at the time of diagnosis; had survived ≥5 years after cancer diagnosis; were aged ≥18 years at the time of the questionnaire survey; and did not refuse to registration in the national or local childhood cancer cohort. ResultsWe identified 24,993 eligible survivors. Of those, 19,268 survivors received a questionnaire and 9871 survivors participated, resulting in response rates of 9871/24,993 (39.50%) of eligible survivors and of 9871/19,268 (51.23%) invited survivors. Most participants were diagnosed with cancer between the ages of 10 and 14 years (3448/9871, 34.93%) or

Details

Language :
English
ISSN :
19290748
Volume :
10
Issue :
1
Database :
Directory of Open Access Journals
Journal :
JMIR Research Protocols
Publication Type :
Academic Journal
Accession number :
edsdoj.5db592ee96dd409f8018a52cb2333d81
Document Type :
article
Full Text :
https://doi.org/10.2196/21851