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

G. Calaminus, K. Baust, C. Berger, J. Byrne, H. Binder, L. Casagranda, D. Grabow, M. Grootenhuis, P. Kaatsch, M. Kaiser, T. Kepak, K. Kepáková, LCM. Kremer, J. Kruseova, A. Luks, C. Spix, M. van den Berg, MMM. van den Heuvel-Eibrink, E. van...

. 2021 ; 10 (1) : e21851. [pub] 20210125

Language English Country Canada

Document type Journal Article

Persistent link   https://www.medvik.cz/link/bmc21010612

BACKGROUND: Survival 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). OBJECTIVE: The 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. METHODS: A 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. RESULTS: We 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 <5 years (3201/9871, 32.43%). The median age was 8 years. Of the 9871 participants, 3157 (31.97%) were survivors of leukemia, 2075 (21.02%) lymphoma, and 1356 (13.7%) central nervous system (CNS) tumors. Most participants (9225/9871, 93.46%) had no history of a subsequent tumor; 77.45% (7645/9871) received chemotherapy with or without other treatments. More than half (5460/9871, 55.31%) were aged 25 to 34 years at the time of the HRQoL study. Participating survivors differed from nonparticipants; participants were more often women, survivors of leukemia or lymphoma, and less frequently, survivors of CNS tumors than nonparticipants. CONCLUSIONS: PanCareLIFE successfully assessed HRQoL and its predictors in 9871 European survivors of childhood cancer. This large population will permit detailed investigations of HRQoL after childhood cancer, particularly the impact of hearing and female fertility impairment on HRQoL. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/21851.

Boyne Research Institute Drogheda Ireland

DCOG LATER Utrecht Netherlands

Department of Paediatric Haematology and Oncology University Hospital Bonn Bonn Germany

Department of Paediatric Haematology and Oncology University Hospital Münster Münster Germany

Department of Paediatric Haematology Oncology 2nd Faculty of Medicine Charles University Prague Czech Republic

Department of Paediatric Hematology and Oncology Unit University Hospital of Saint Étienne Saint Étienne France

Department of Paediatric Oncology Emma Children's Hospital Amsterdam UMC Vrije Universiteit Amsterdam Amsterdam Netherlands

Division of Childhood Cancer Epidemiology German Childhood Cancer Registry Institute of Medical Biostatistics Epidemiology and Informatics University Medical Center of the Johannes Gutenberg University Mainz Mainz Germany

Host Research Team EA4607 SNA EPIS Lyon St Etienne France

Institute of Medical Biometry and Statistics Faculty of Medicine and Medical Center University of Freiburg Freiburg Germany

International Clinical Research Center Masaryk University Brno Czech Republic

Pediatric Endocrinology Diabetology and Metabolism Department of Pediatrics Inselspital Bern University Hospital Bern Switzerland

Pediatric Oncology Inselspital Bern University Hospital University of Bern Bern Switzerland

Princess Máxima Center for Pediatric Oncology Utrecht Netherlands

Sophias Childrens Hospital Erasmus MC Rotterdam Netherlands

Swiss Childhood Cancer Registry Institute of Social and Preventive Medicine University of Bern Bern Switzerland

University Hospital Brno Masaryk University Brno Czech Republic

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$a Calaminus, Gabriele $u Department of Paediatric Haematology and Oncology, University Hospital Bonn, Bonn, Germany ; Department of Paediatric Haematology and Oncology, University Hospital Münster, Münster, Germany
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$a BACKGROUND: Survival 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). OBJECTIVE: The 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. METHODS: A 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. RESULTS: We 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 <5 years (3201/9871, 32.43%). The median age was 8 years. Of the 9871 participants, 3157 (31.97%) were survivors of leukemia, 2075 (21.02%) lymphoma, and 1356 (13.7%) central nervous system (CNS) tumors. Most participants (9225/9871, 93.46%) had no history of a subsequent tumor; 77.45% (7645/9871) received chemotherapy with or without other treatments. More than half (5460/9871, 55.31%) were aged 25 to 34 years at the time of the HRQoL study. Participating survivors differed from nonparticipants; participants were more often women, survivors of leukemia or lymphoma, and less frequently, survivors of CNS tumors than nonparticipants. CONCLUSIONS: PanCareLIFE successfully assessed HRQoL and its predictors in 9871 European survivors of childhood cancer. This large population will permit detailed investigations of HRQoL after childhood cancer, particularly the impact of hearing and female fertility impairment on HRQoL. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/21851.
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$a Kaiser, Melanie $u Division of Childhood Cancer Epidemiology, German Childhood Cancer Registry, Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), University Medical Center of the Johannes Gutenberg University Mainz, Mainz, Germany
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$a Kepak, Tomas $u University Hospital Brno, Masaryk University, Brno, Czech Republic ; International Clinical Research Center (FNUSA-ICRC), Masaryk University, Brno, Czech Republic
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$a Luks, Ales $u Department of Paediatric Haematology/Oncology, Second Faculty of Medicine, Charles University, Prague, Czech Republic
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