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Childhood leukemia and non-Hodgkin’s lymphoma survivors lack knowledge about their past disease and possible late effects. I-BFM ELTEC study with Chilean and Croatian participation

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Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

Late effects in childhood cancer survivors are a major cause of morbidity and mortality. The objective was to establish knowledge about the disease, late effects, self-care practices, application of health knowledge/education, sources of information, and biopsychosocial impact of cancer, and compare the results of Chile and Croatia.

Methods

One-hundred-and-seventy-one, 5-year survivors who were treated for leukemia or non-Hodgkin’s lymphoma responded to a questionnaire (119 in Chile and 52 in Croatia). The questionnaire was reviewed by BFM-ELTEC.

Results

Health knowledge about past diagnosis and general treatment had 96% Chilean and 85% Croatian survivors. Ninety percent of Chilean and 73% of Croatian survivors were unaware of possible late effects, and half did not know which specialist to visit for follow-up. Forty-six percent of Chilean and 35% of Croatian survivors knew about healthy lifestyles, but most did not practice them. The 74% of Chileans and 87% of Croatian survivors recalled having received health education during treatment. About 50% of survivors in both groups were afraid or anguish, but it was also a growth experience for 60% of Chilean and 42% of Croatian survivors. Eighty-seven percent Chilean and 77% Croatian survivors considered themselves physically independent, while 76% and 75% felt psychologically independent, respectively.

Conclusion

A significant lack of knowledge about the specific treatment, late effects, and future health in both countries was detected. They did not achieve significant learning with the education received. Psychological sequelae were found that are important to prevent.

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Data availability

The research data are available in a database and we also have the surveys of each patient for review.

Code availability

Not applicable.

Abbreviations

PINDA:

Chilean collaborative pediatric oncology group

I-BFM:

International German Berlin, Frankfurt, Muenster Group

BFM-ELTEC:

Early and Late Toxicity Education Committee of BFM Study Group

AYAS:

Adolescents and young adults

SEPHO:

Croatian Group

ALL-AML:

Acute Lymphoblastic Leukemia-Acute Myeloblastic Leukemia

NHL:

Non-Hodgkin’s lymphoma

NEETs:

Not in education, employment or training

CT:

Chemotherapy

RT:

Radiotherapy

SX:

Surgery

M:

Male

F:

Female

NR:

Did not respond

NS:

Not significant

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Acknowledgements

Thanks to all collaborators in the Chilean (PINDA) network: María Soledad Fernández, Magdalena Fernández, Laura Neira, Maite Rosas, Verónica Oyarce, Paulina Fuentes, Tamara Inostroza, Nuri Moliné, Marcela Venega and Rodrigo Donoso; all of them contributed to obtaining informed consent, applying the questionnaire, and collecting data. As well as, thanks to collaborators Lucija Ruzman and Ernest Bilic from the Croatian Group (SEPHO), who also contributed to obtaining informed consent, applying the questionnaire, and collecting data and Julie Byrne to review this article.

Author information

Authors and Affiliations

  1. Department of Pediatric Oncology and Hematology, PINDA Group, Hospital Sótero del Río, Unidad de Oncología-Red PINDA, Avenida Concha y Toro 3459, Santiago, 8150000, Puente Alto, Chile

    Ana Becker, Cristina Bustos, Amaia Rosas & Paula Contreras

  2. Department of Pediatric Oncology and Hematology, PINDA Group, Hospital Luis Calvo Mackenna, Santiago, Chile

    Claudia Paris

  3. Instituto de Pediatría, Facultad de Medicina, Universidad Austral de Chile, Valdivia, Chile

    Claudia Paris

  4. SEPHO Group, I-BFM, Rijeka, Croatia

    Jelena Roganovic

  5. Facultad de Medicina, Escuela de Tecnología Médica, Universidad de Valparaíso, Valparaíso, Chile

    Ana J. Zepeda-Ortega

  6. St Anna Children’s Hospital, Vienna, Austria

    Edit Bardi

  7. Department of Pediatrics and Adolescent Medicine, Johannes Kepler University Linz, Kepler University Hospital, Linz, Austria

    Edit Bardi

Authors
  1. Ana Becker
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  2. Claudia Paris
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  3. Jelena Roganovic
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  4. Cristina Bustos
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  5. Amaia Rosas
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  6. Paula Contreras
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  7. Ana J. Zepeda-Ortega
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Contributions

Ana Becker: designed the clinical survey, coordinated the collaboration between cohorts of Chile and Croatia, worked on getting the approval by the ethics committee in Chile, s, designed the survey t, distributed the survey, collected and analysis the data from the survey, and wrote and edited the manuscript.

Claudia Paris: She has worked in the clinical design and approval by the ethics committee in Chile, coordination of the collaboration between cohorts of different countries, distribution of the survey, collection of data and analysis all throughout Chile, analysis of the data collected from both countries and writing and editing the manuscript that summarizes the main findings.

Jelena Roganovic: She has worked on the coordination of the collaboration between cohorts of different countries, distribution of the survey, collection of data and analysis all through Croatia, and writing and editing the manuscript and abstract that summarizes the main findings.

Cristina Bustos: She has worked in the clinical design of the project, distribution of the survey, collection of data and analysis in that hospital and editing the manuscript that summarizes the main findings.

Amaia Rosas: She has worked in the clinical design of the project, she was responsible for the psychological aspect of the project, distribution of the survey, collection of psychological data and analysis. Also participated in editing the manuscript that summarizes the main findings.

Paula Contreras: She has worked in the clinical design of the project, distribution of the survey, collection of data and analysis, as well as in the interpretation of data and final review of the manuscript.

Ana Zepeda: She worked in analysis and interpretation of data. She performed all the statistical analysis, tables and graphs and revision of the manuscript.

Edit Bardi: She has worked in design of the project, coordination of the collaboration between cohorts of different countries, stimulated international collaboration, editing the manuscript that summarizes the main findings, as well as interpretation of data and drafting and final approval of the manuscript.

Corresponding author

Correspondence to Ana Becker.

Ethics declarations

Ethics approval and consent to participate

This study has been approved by the Ethics Committees of the different participating centers. Informed consent was requested from each patient before enrolling them in the study.

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All authors, collaborators, and patients agree to the publication of this article in this journal.

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The authors declare no competing interests.

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Becker, A., Paris, C., Roganovic, J. et al. Childhood leukemia and non-Hodgkin’s lymphoma survivors lack knowledge about their past disease and possible late effects. I-BFM ELTEC study with Chilean and Croatian participation. Support Care Cancer 30, 3839–3847 (2022). https://doi.org/10.1007/s00520-021-06741-5

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  • DOI: https://doi.org/10.1007/s00520-021-06741-5

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