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2. A joint international consensus statement for measuring quality of survival for patients with childhood cancer

Author

van Kalsbeek, Rebecca J., Hudson, Melissa M., Mulder, Renée L., Ehrhardt, Matthew, Green, Daniel M., Mulrooney, Daniel A., Hakkert, Jessica, den Hartogh, Jaap, Nijenhuis, Anouk, van Santen, Hanneke M., Schouten-van Meeteren, Antoinette Y. N., van Tinteren, Harm, Verbruggen, Lisanne C., Conklin, Heather M., Jacola, Lisa M., Webster, Rachel Tillery, Partanen, Marita, Kollen, Wouter J. W., Grootenhuis, Martha A., Pieters, Rob, and Kremer, Leontien C. M.

Published
2023
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3. Author Correction: A joint international consensus statement for measuring quality of survival for patients with childhood cancer

Author

van Kalsbeek, Rebecca J., Hudson, Melissa M., Mulder, Renée L., Ehrhardt, Matthew, Green, Daniel M., Mulrooney, Daniel A., Hakkert, Jessica, den Hartogh, Jaap, Nijenhuis, Anouk, van Santen, Hanneke M., Schouten-van Meeteren, Antoinette Y. N., van Tinteren, Harm, Verbruggen, Lisanne C., Conklin, Heather M., Jacola, Lisa M., Webster, Rachel Tillery, Partanen, Marita, Kollen, Wouter J. W., Grootenhuis, Martha A., Pieters, Rob, and Kremer, Leontien C. M.

Published
2024
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4. Risk and determinants of low and very low bone mineral density and fractures in a national cohort of Dutch adult childhood cancer survivors (DCCSS-LATER): a cross-sectional study

Author

van Atteveld, Jenneke E, de Winter, Demi T C, Pluimakers, Vincent G, Fiocco, Marta, Nievelstein, Rutger A J, Hobbelink, Monique G G, de Vries, Andrica C H, Loonen, Jacqueline J, van Dulmen-den Broeder, Eline, van der Pal, Helena J, Pluijm, Saskia M F, Kremer, Leontien C M, Ronckers, Cécile M, van der Heiden-van der Loo, Margriet, Versluijs, A Birgitta, Louwerens, Marloes, Bresters, Dorine, van Santen, Hanneke M, Olsson, Daniel S, Hoefer, Imo, van den Berg, Sjoerd A A, den Hartogh, Jaap, Tissing, Wim J E, Neggers, Sebastian J C M M, and van den Heuvel-Eibrink, Marry M

Published
2023
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5. European PanCareFollowUp Recommendations for surveillance of late effects of childhood, adolescent, and young adult cancer

Author

van Kalsbeek, Rebecca J., van der Pal, Helena J.H., Kremer, Leontien C.M., Bardi, Edit, Brown, Morven C., Effeney, Rachel, Winther, Jeanette F., Follin, Cecilia, den Hartogh, Jaap, Haupt, Riccardo, Hjorth, Lars, Kepak, Tomas, Kepakova, Katerina, Levitt, Gill, Loonen, Jacqueline J., Mangelschots, Marlies, Muraca, Monica, Renard, Marleen, Sabic, Harun, Schneider, Carina U., Uyttebroeck, Anne, Skinner, Roderick, and Mulder, Renée L.

Published
2021
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6. The European multistakeholder PanCareFollowUp project: novel, person-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for cancer survivors and caregivers

Author

Kremer, Leontien C.M., Van der Pal, Helena J.H., Mulder, Renée L., Pluijm, Saskia M.F., van Kalsbeek, Rebecca J., Van den Oever, Selina R., Hjorth, Lars, Follin, Cecilia, Eriksson, Lill, Relander, Thomas, Engellau, Jacob, Fjordén, Karin, Bogefors, Karolina, Holmqvist, Anna Säll fors, Haupt, Riccardo, Muraca, Monica, Nicolas, Brigitte, Bagnasco, Francesca, Benvenuto, Marina, Aulicino, Anna, Laudisi, Luca, Araujo-Soares, Vera, Kepak, Tomas, Kepakova, Katerina, Hrstkova, Hana, Bajciova, Viera, Holikova, Marta, Strublova, Lucie, Uyttebroeck, Anne, Renard, Marleen, Jacobs, Sandra, Segers, Heidi, Van Helvoirt, Monique, Winther, Jeanette Falck, Mader, Luzius, Frederiksen, Line Elmerdahl, Andersen, Elisabeth Anne Wreford, Michel, Gisela, Boes, Stefan, Roser, Katharina, Loonen, Jacqueline, Hermens, Rosella, Göttgens, Irene, Bouwman, Eline, Stollman, Iridi, Penson, Adriaan, Skinner, Roderick, Brown, Morven C., Essiaf, Samira, Blondeel, Anne, Sciberras, William, Korevaar, Joke, Rijken, Mieke, Kienesberger, Anita, Den Hartogh, Jaap, Gsell, Hannah, Schneider, Carina, Hartogh, Jaap den, Bardi, Edit, Te Dorsthorst, Jeroen, van der Pal, Helena J.H., Winther, Jeanette F., O'Brien, Kylie, Frederiksen, Line E., Hermens, Rosella P.M.G., Korevaar, Joke C., Mangelschots, Marlies, van den Oever, Selina, Skinner, Rod, and Loonen, Jacqueline J.

Published
2021
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7. Clinical characteristics of subsequent histologically confirmed meningiomas in long-term childhood cancer survivors: A Dutch LATER study

Author

Louwerens, Marloes, de Vries, Andrica, Jaspers, Monique, Hollema, Nynke, den Hartogh, Jaap, Schouten-van Meeteren, Netteke, Verbruggen, Lisanne C., Kok, Judith L., Teepen, Jop C., Janssens, Geert O., de Boer, Charlotte M., Stalpers, Lukas J.A., Vernooij, Meike W., van Dulmen-den Broeder, Eline, Loonen, Jacqueline J., van den Heuvel-Eibrink, Marry M., Tissing, Wim J.E., van der Heiden-van der Loo, Margriet, Versluys, Anne Birgitta, Neggers, Sebastian J.C.M.M., van Leeuwen, Flora E., Hoving, Eelco W., Wesseling, Pieter, Kremer, Leontine C.M., Ronckers, Cécile M., and van der Pal, Helena J.H.

Published
2021
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8. Fertility preservation for male patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

Berger, Claire, Diesch, Tamara, Giwercman, Aleksander, Grabow, Desiree, Gracia, Clarisa, Hunter, Sarah E, Inthorn, Julia, Kaatsch, Peter, Kelvin, Joanne F, Klosky, James L, Laven, Joop S E, Lockart, Barbara A, Neggers, Sebastian JCMM, Paul, Norbert W, Peate, Michelle, Phillips, Bob, Quinn, Gwendolyn P, Reed, Damon R, Tinner, Eva Maria E, van den Berg, Marleen, Verhaak, Chris, Mulder, Renée L, Font-Gonzalez, Anna, Green, Daniel M, Loeffen, Erik A H, Hudson, Melissa M, Loonen, Jacqueline, Yu, Richard, Ginsberg, Jill P, Mitchell, Rod T, Byrne, Julianne, Skinner, Roderick, Anazodo, Antoinette, Constine, Louis S, de Vries, Andrica, Jahnukainen, Kirsi, Lorenzo, Armando, Meissner, Andreas, Nahata, Leena, Dinkelman-Smit, Marij, Tournaye, Herman, Haupt, Riccardo, van den Heuvel-Eibrink, Marry M, van Santen, Hanneke M, van Pelt, Ans M M, Dirksen, Uta, den Hartogh, Jaap, van Dulmen-den Broeder, Eline, Wallace, W Hamish, Levine, Jennifer, Tissing, Wim J E, Kremer, Leontien C M, Kenney, Lisa B, and van de Wetering, Marianne D

Published
2021
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10. The ‘Survivorship Passport’ for childhood cancer survivors

Author

Menoni, Stefania, Bergeron, Christophe, den Hartogh, Jaap, Karner, Sabine, Fresneau, Brice, Jones, Kathy Pritchard, Vassal, Gilles, Bode, Gerlind, Frey, Eva, Hennewig, Ulrike, Iris, Maia, Jakab, Zsuzsanna, Kosmidis, Helen, Kriviene, Izolda, Marquez, Catalina, Modan-Moses, Dalit, Panasiuk, Anna, Vetsch, Janine, Haupt, Riccardo, Essiaf, Samira, Dellacasa, Chiara, Ronckers, Cecile M., Caruso, Silvia, Sugden, Elaine, Zadravec Zaletel, Lorna, Muraca, Monica, Morsellino, Vera, Kienesberger, Anita, Blondeel, Anne, Saraceno, Davide, Ortali, Maurizio, Kremer, Leontien C.M., Skinner, Roderick, Roganovic, Jelena, Bagnasco, Francesca, Levitt, Gill A., De Rosa, Marisa, Schrappe, Martin, Hjorth, Lars, and Ladenstein, Ruth

Published
2018
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12. Long-term survivors of childhood cancer: cure and care—the Erice Statement (2006) revised after 10 years (2016)

Author

Jankovic, Momcilo, Haupt, Riccardo, Spinetta, John J., Beck, Joern D., Byrne, Julianne, Calaminus, Gabriele, Lackner, Herwig, Biondi, Andrea, Oeffinger, Kevin, Hudson, Melissa, Skinner, Roderick, Reaman, Gregory, van der Pal, Helena, Kremer, Leontien, den Hartogh, Jaap, Michel, Gisela, Frey, Eva, Bardi, Edit, Hawkins, Michael, Rizvi, Katie, Terenziani, Monica, Valsecchi, Maria Grazia, Bode, Gerlind, Jenney, Meriel, de Vathaire, Florent, Garwicz, Stanislaw, Levitt, Gill A., Grabow, Desiree, Kuehni, Claudia E., Schrappe, Martin, Hjorth, Lars, and participants in PanCare

Published
2018
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13. Monitoring health related quality of life in survivorship care of young adult survivors of childhood cancer using web-based patient-reported outcome measures: survivors’ and health care practitioners’ perspectives on the KLIK method

Author

Maas, Anne, primary, Maurice-Stam, Heleen, additional, van den Heuvel, Marloes H., additional, Koopman, Maria M. W., additional, den Hartogh, Jaap G., additional, Kremer, Leontien C. M., additional, and Grootenhuis, Martha, additional

Published
2023
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14. Adverse late health outcomes among children treated with 3D radiotherapy techniques:Study design of the Dutch pediatric 3D-RT study

Author

Beijer, Josien G.M., Kok, Judith L., Janssens, Geert O., Streefkerk, Nina, de Vries, Andrica C.H., Slagter, Cleo, Maduro, John H., Kroon, Petra S., Grootenhuis, Martha A., van Dulmen-den Broeder, Eline, Loonen, Jacqueline J., Wendling, Markus, Tissing, Wim J.E., van der Pal, Helena J., Louwerens, Marloes, Bel, Arjan, den Hartogh, Jaap, van der Heiden-van der Loo, Margriet, Kremer, Leontien C.M., Teepen, Jop C., Ronckers, Cécile M., Beijer, Josien G.M., Kok, Judith L., Janssens, Geert O., Streefkerk, Nina, de Vries, Andrica C.H., Slagter, Cleo, Maduro, John H., Kroon, Petra S., Grootenhuis, Martha A., van Dulmen-den Broeder, Eline, Loonen, Jacqueline J., Wendling, Markus, Tissing, Wim J.E., van der Pal, Helena J., Louwerens, Marloes, Bel, Arjan, den Hartogh, Jaap, van der Heiden-van der Loo, Margriet, Kremer, Leontien C.M., Teepen, Jop C., and Ronckers, Cécile M.

Abstract

Background: Adverse late health outcomes after multimodal treatment for pediatric cancer are diverse and of prime interest. Currently available evidence and survivorship care guidelines are largely based on studies addressing side-effects of two dimensional planned radiotherapy. Aims: The Dutch pediatric 3D-planned radiotherapy (3D-RT) study aims to gain insight in the long-term health outcomes among children who had radiotherapy in the 3D era. Here, we describe the study design, data-collection methods, and baseline cohort characteristics. Methods and Results: The 3D-RT study represents an expansion of the Dutch Childhood Cancer Survivor study (DCCSS) LATER cohort, including pediatric cancer patients diagnosed during 2000–2012, who survived at least 5 years after initial diagnosis and 2 years post external beam radiotherapy. Individual cancer treatment parameters were obtained from medical files. A national infrastructure for uniform collection and archival of digital radiotherapy files (Computed Tomography [CT]-scans, delineations, plan, and dose files) was established. Health outcome information, including subsequent tumors, originated from medical records at the LATER outpatient clinics, and national registry-linkage. With a median follow-up of 10.9 (interquartile range [IQR]: 7.9–14.3) years after childhood cancer diagnosis, 711 eligible survivors were identified. The most common cancer types were Hodgkin lymphoma, medulloblastoma, and nephroblastoma. Most survivors received radiotherapy directed to the head/cranium only, the craniospinal axis, or the abdominopelvic region. Conclusion: The 3D-RT study will provide knowledge on the risk of adverse late health outcomes and radiation-associated dose-effect relationships. This information is valuable to guide follow-up care of childhood cancer survivors and to refine future treatment protocols.

Published
2023

15. Frailty and sarcopenia within the earliest national Dutch childhood cancer survivor cohort (DCCSS-LATER):a cross-sectional study

Author

van Atteveld, Jenneke E, de Winter, Demi T C, Pluimakers, Vincent G, Fiocco, Marta, Nievelstein, Rutger A J, Hobbelink, Monique G G, Kremer, Leontien C M, Grootenhuis, Martha A, Maurice-Stam, Heleen, Tissing, Wim J E, de Vries, Andrica C H, Loonen, Jacqueline J, van Dulmen-den Broeder, Eline, van der Pal, Helena J H, Pluijm, Saskia M F, van der Heiden-van der Loo, Margriet, Versluijs, A Birgitta, Louwerens, Marloes, Bresters, Dorine, van Santen, Hanneke M, Hoefer, Imo, van den Berg, Sjoerd A A, den Hartogh, Jaap, Hoeijmakers, Jan H J, Neggers, Sebastian J C M M, van den Heuvel-Eibrink, Marry M, van Atteveld, Jenneke E, de Winter, Demi T C, Pluimakers, Vincent G, Fiocco, Marta, Nievelstein, Rutger A J, Hobbelink, Monique G G, Kremer, Leontien C M, Grootenhuis, Martha A, Maurice-Stam, Heleen, Tissing, Wim J E, de Vries, Andrica C H, Loonen, Jacqueline J, van Dulmen-den Broeder, Eline, van der Pal, Helena J H, Pluijm, Saskia M F, van der Heiden-van der Loo, Margriet, Versluijs, A Birgitta, Louwerens, Marloes, Bresters, Dorine, van Santen, Hanneke M, Hoefer, Imo, van den Berg, Sjoerd A A, den Hartogh, Jaap, Hoeijmakers, Jan H J, Neggers, Sebastian J C M M, and van den Heuvel-Eibrink, Marry M

Abstract

BACKGROUND: Childhood cancer survivors appear to be at increased risk of frailty and sarcopenia, but evidence on the occurrence of and high-risk groups for these aging phenotypes is scarce, especially in European survivors. The aim of this cross-sectional study was to assess the prevalence of and explore risk factors for pre-frailty, frailty, and sarcopenia in a national cohort of Dutch childhood cancer survivors diagnosed between 1963 and 2001.METHODS: Eligible individuals (alive at the time of study, living in the Netherlands, age 18-45 years, and had not previously declined to participate in a late-effects study) from the Dutch Childhood Cancer Survivor Study (DCCSS-LATER) cohort were invited to take part in this cross-sectional study. We defined pre-frailty and frailty according to modified Fried criteria, and sarcopenia according to the European Working Group on Sarcopenia in Older People 2 definition. Associations between these conditions and demographic and treatment-related as well as endocrine and lifestyle-related factors were estimated with two separate multivariable logistic regression models in survivors with any frailty measurement or complete sarcopenia measurements.FINDINGS: 3996 adult survivors of the DCCSS-LATER cohort were invited to participate in this cross-sectional study. 1993 non-participants were excluded due to lack of response or a decline to participate and 2003 (50·1%) childhood cancer survivors aged 18-45 years were included. 1114 (55·6%) participants had complete frailty measurements and 1472 (73·5%) participants had complete sarcopenia measurements. Mean age at participation was 33·1 years (SD 7·2). 1037 (51·8%) participants were male, 966 (48·2%) were female, and none were transgender. In survivors with complete frailty measurements or complete sarcopenia measurements, the percentage of pre-frailty was 20·3% (95% CI 18·0-22·7), frailty was 7·4% (6·0-9·0), and sarcopenia was 4·4% (3·5-5·6). In the models for pre-frai

Published
2023

16. Clinical evaluation of late outcomes in Dutch childhood cancer survivors:Methodology of the DCCSS LATER 2 study

Author

Feijen, Elizabeth A.M., Teepen, Jop C., van Dulmen-den Broeder, Eline, van den Heuvel-Eibrink, Marry M., van der Heiden-van der Loo, Margriet, van der Pal, Helena J.H., de Vries, Andrica C.H., Louwerens, Marloes, Bresters, Dorine, Versluys, Birgitta, de Ridder, Hanneke, Veening, Margreet, van Leeuwen, Flora E., Grootenhuis, Martha, Maurice-Stam, Heleen, van Santen, Hanneke M., Neggers, Sebastian J.C.M.M., Pluijm, Saskia, den Hartogh, Jaap, Ronckers, Cécile M., Tissing, Wim J.E., Loonen, Jacqueline J., Kremer, Leontien C.M., Feijen, Elizabeth A.M., Teepen, Jop C., van Dulmen-den Broeder, Eline, van den Heuvel-Eibrink, Marry M., van der Heiden-van der Loo, Margriet, van der Pal, Helena J.H., de Vries, Andrica C.H., Louwerens, Marloes, Bresters, Dorine, Versluys, Birgitta, de Ridder, Hanneke, Veening, Margreet, van Leeuwen, Flora E., Grootenhuis, Martha, Maurice-Stam, Heleen, van Santen, Hanneke M., Neggers, Sebastian J.C.M.M., Pluijm, Saskia, den Hartogh, Jaap, Ronckers, Cécile M., Tissing, Wim J.E., Loonen, Jacqueline J., and Kremer, Leontien C.M.

Abstract

Background: Childhood cancer survivors face late health problems; despite advances in research, details on risk remain unclear. We describe the methodological aspects of the Dutch Childhood Cancer Survivor Study (DCCSS) cross-sectional clinical study (LATER 2 study). Procedure: From the multi-center DCCSS LATER cohort of 6165 five-year survivors diagnosed during 1963–2001, we invited 4735 eligible survivors in 2016, as well as siblings and parents of survivors. Gaps in evidence identified during development of surveillance guidelines were translated into clinical research questions for 16 outcome-specific subprojects. The regular care visit to the LATER outpatient clinic forms the backbone of outcome assessment complemented with research-defined measurements (physical examination, clinical tests, questionnaires). Furthermore, blood/saliva samples were taken for deoxyribonucleic acid (DNA) extraction. Results: In total, 2519 (53.2%) survivors participated in the LATER 2 study. When comparing participants with nonparticipants, we observed that males, CNS survivors, and those treated with surgery only were less likely to participate. Of the participating survivors, 49.3% were female. Median time since childhood cancer diagnosis was 26.9 years (range 14.8–54.7 years) and median attained age was 34.4 years (range 15.4–66.6 years). Conclusions: The high-quality data generated in the LATER 2 study will provide valuable insights into risks of and risk factors for clinical and physical and psychosocial health outcomes and factors for early recognition of those health outcomes in long-term childhood cancer survivors. This will contribute to fill in important gaps in knowledge and improve the quality of life and care for childhood cancer survivors.

Published
2023

17. Questionnaire- and linkage-based outcomes in Dutch childhood cancer survivors:Methodology of the DCCSS LATER study part 1

Author

Teepen, Jop C., Kok, Judith L., Feijen, Elizabeth A.M., Loonen, Jacqueline J., van den Heuvel-Eibrink, Marry M., van der Pal, Helena J., Tissing, Wim J.E., Bresters, Dorine, Versluys, Birgitta, Grootenhuis, Martha A., Louwerens, Marloes, Neggers, Sebastian J.C.M.M., van Santen, Hanneke M., de Vries, Andrica, Janssens, Geert O., den Hartogh, Jaap G., van Leeuwen, Flora E., Hollema, Nynke, Streefkerk, Nina, Kilsdonk, Ellen, van der Heiden-van der Loo, Margriet, van Dulmen-den Broeder, Eline, Ronckers, Cécile M., Kremer, Leontien C.M., Teepen, Jop C., Kok, Judith L., Feijen, Elizabeth A.M., Loonen, Jacqueline J., van den Heuvel-Eibrink, Marry M., van der Pal, Helena J., Tissing, Wim J.E., Bresters, Dorine, Versluys, Birgitta, Grootenhuis, Martha A., Louwerens, Marloes, Neggers, Sebastian J.C.M.M., van Santen, Hanneke M., de Vries, Andrica, Janssens, Geert O., den Hartogh, Jaap G., van Leeuwen, Flora E., Hollema, Nynke, Streefkerk, Nina, Kilsdonk, Ellen, van der Heiden-van der Loo, Margriet, van Dulmen-den Broeder, Eline, Ronckers, Cécile M., and Kremer, Leontien C.M.

Abstract

Background: Childhood cancer survivors are at risk for developing long-term adverse health outcomes. To identify the risk of and risk factors for specific health outcomes, well-established cohorts are needed with detailed information on childhood cancer diagnosis, treatment, and health outcomes. We describe the design, methodology, characteristics, and data availability of the Dutch Childhood Cancer Survivor Study LATER cohort (1963–2001) part 1; questionnaire and linkage studies. Methods: The LATER cohort includes 5-year childhood cancer survivors, diagnosed in the period 1963–2001, and before the age of 18 in any of the seven former pediatric oncology centers in the Netherlands. Information on health outcomes from survivors and invited siblings of survivors was collected by questionnaires and linkages to medical registries. Results: In total, 6165 survivors were included in the LATER cohort. Extensive data on diagnosis and treatment have been collected. Information on a variety of health outcomes has been ascertained by the LATER questionnaire study and linkages with several registries for subsequent tumors, health care use, and hospitalizations. Conclusion: Research with data of the LATER cohort will provide new insights into risks of and risk factors for long-term health outcomes. This can enhance risk stratification for childhood cancer survivors and inform surveillance guidelines and development of interventions to prevent (the impact of) long-term adverse health outcomes. The data collected will be a solid baseline foundation for future follow-up studies.

Published
2023

18. Adverse late health outcomes among children treated with 3D radiotherapy techniques: Study design of the Dutch pediatric 3D-RT study

Author

MS Radiotherapie, Cancer, PMC Medisch specialisten, Klinische Fysica RT, Child Health, Zorg en O&O, Beijer, Josien G.M., Kok, Judith L., Janssens, Geert O., Streefkerk, Nina, de Vries, Andrica C.H., Slagter, Cleo, Maduro, John H., Kroon, Petra S., Grootenhuis, Martha A., van Dulmen-den Broeder, Eline, Loonen, Jacqueline J., Wendling, Markus, Tissing, Wim J.E., van der Pal, Helena J., Louwerens, Marloes, Bel, Arjan, den Hartogh, Jaap, van der Heiden-van der Loo, Margriet, Kremer, Leontien C.M., Teepen, Jop C., Ronckers, Cécile M., MS Radiotherapie, Cancer, PMC Medisch specialisten, Klinische Fysica RT, Child Health, Zorg en O&O, Beijer, Josien G.M., Kok, Judith L., Janssens, Geert O., Streefkerk, Nina, de Vries, Andrica C.H., Slagter, Cleo, Maduro, John H., Kroon, Petra S., Grootenhuis, Martha A., van Dulmen-den Broeder, Eline, Loonen, Jacqueline J., Wendling, Markus, Tissing, Wim J.E., van der Pal, Helena J., Louwerens, Marloes, Bel, Arjan, den Hartogh, Jaap, van der Heiden-van der Loo, Margriet, Kremer, Leontien C.M., Teepen, Jop C., and Ronckers, Cécile M.

Published
2023

19. Clinical evaluation of late outcomes in Dutch childhood cancer survivors: Methodology of the DCCSS LATER 2 study

Author

Speerpunt, Zorg en O&O, Cancer, Child Health, SCT patientenzorg, Endocrinologie patientenzorg, Brain, PMC Research, Klinische Fysica RT, PMC Medisch specialisten, Feijen, Elizabeth A.M., Teepen, Jop C., van Dulmen-den Broeder, Eline, van den Heuvel-Eibrink, Marry M., van der Heiden-van der Loo, Margriet, van der Pal, Helena J.H., de Vries, Andrica C.H., Louwerens, Marloes, Bresters, Dorine, Versluys, Birgitta, de Ridder, Hanneke, Veening, Margreet, van Leeuwen, Flora E., Grootenhuis, Martha, Maurice-Stam, Heleen, van Santen, Hanneke M., Neggers, Sebastian J.C.M.M., Pluijm, Saskia, den Hartogh, Jaap, Ronckers, Cécile M., Tissing, Wim J.E., Loonen, Jacqueline J., Kremer, Leontien C.M., Speerpunt, Zorg en O&O, Cancer, Child Health, SCT patientenzorg, Endocrinologie patientenzorg, Brain, PMC Research, Klinische Fysica RT, PMC Medisch specialisten, Feijen, Elizabeth A.M., Teepen, Jop C., van Dulmen-den Broeder, Eline, van den Heuvel-Eibrink, Marry M., van der Heiden-van der Loo, Margriet, van der Pal, Helena J.H., de Vries, Andrica C.H., Louwerens, Marloes, Bresters, Dorine, Versluys, Birgitta, de Ridder, Hanneke, Veening, Margreet, van Leeuwen, Flora E., Grootenhuis, Martha, Maurice-Stam, Heleen, van Santen, Hanneke M., Neggers, Sebastian J.C.M.M., Pluijm, Saskia, den Hartogh, Jaap, Ronckers, Cécile M., Tissing, Wim J.E., Loonen, Jacqueline J., and Kremer, Leontien C.M.

Published
2023

20. Frailty and sarcopenia within the earliest national Dutch childhood cancer survivor cohort (DCCSS-LATER): a cross-sectional study

Author

van Atteveld, Jenneke E, primary, de Winter, Demi T C, additional, Pluimakers, Vincent G, additional, Fiocco, Marta, additional, Nievelstein, Rutger A J, additional, Hobbelink, Monique G G, additional, Kremer, Leontien C M, additional, Grootenhuis, Martha A, additional, Maurice-Stam, Heleen, additional, Tissing, Wim J E, additional, de Vries, Andrica C H, additional, Loonen, Jacqueline J, additional, van Dulmen-den Broeder, Eline, additional, van der Pal, Helena J H, additional, Pluijm, Saskia M F, additional, van der Heiden-van der Loo, Margriet, additional, Versluijs, A Birgitta, additional, Louwerens, Marloes, additional, Bresters, Dorine, additional, van Santen, Hanneke M, additional, Hoefer, Imo, additional, van den Berg, Sjoerd A A, additional, den Hartogh, Jaap, additional, Hoeijmakers, Jan H J, additional, Neggers, Sebastian J C M M, additional, and van den Heuvel-Eibrink, Marry M, additional

Published
2023
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21. Adverse late health outcomes among children treated with 3D radiotherapy techniques: Study design of the Dutch pediatric 3D‐RT study

Author

Beijer, Josien G. M., primary, Kok, Judith L., additional, Janssens, Geert O., additional, Streefkerk, Nina, additional, de Vries, Andrica C. H., additional, Slagter, Cleo, additional, Maduro, John H., additional, Kroon, Petra S., additional, Grootenhuis, Martha A., additional, van Dulmen‐den Broeder, Eline, additional, Loonen, Jacqueline J., additional, Wendling, Markus, additional, Tissing, Wim J. E., additional, van der Pal, Helena J., additional, Louwerens, Marloes, additional, Bel, Arjan, additional, den Hartogh, Jaap, additional, van der Heiden‐van der Loo, Margriet, additional, Kremer, Leontien C. M., additional, Teepen, Jop C., additional, and Ronckers, Cécile M., additional

Published
2023
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22. Clinical evaluation of late outcomes in Dutch childhood cancer survivors: Methodology of the DCCSS LATER 2 study

Author

Feijen, Elizabeth A. M., primary, Teepen, Jop C., additional, van Dulmen‐den Broeder, Eline, additional, van den Heuvel‐Eibrink, Marry M., additional, van der Heiden‐van der Loo, Margriet, additional, van der Pal, Helena J. H., additional, de Vries, Andrica C. H., additional, Louwerens, Marloes, additional, Bresters, Dorine, additional, Versluys, Birgitta, additional, de Ridder, Hanneke, additional, Veening, Margreet, additional, van Leeuwen, Flora E., additional, Grootenhuis, Martha, additional, Maurice‐Stam, Heleen, additional, van Santen, Hanneke M., additional, Neggers, Sebastian J. C. M. M., additional, Pluijm, Saskia, additional, den Hartogh, Jaap, additional, Ronckers, Cécile M., additional, Tissing, Wim J. E., additional, Loonen, Jacqueline J., additional, and Kremer, Leontien C. M., additional

Published
2023
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23. Person-centred online lifestyle coaching in childhood, adolescent, and young adult cancer survivors: protocol of the multicentre PanCareFollowUp lifestyle intervention feasibility study

Author

Bouwman, Eline, Hermens, Rosella P. M. G., Brown, Morven C., Araújo-Soares, Vera, Blijlevens, Nicole M. A., Kepak, Tomas, Kepakova, Katerina, Kremer, Leontien C. M., van den Oever, Selina R., van der Pal, Helena J. H., Skinner, Roderick, Pluijm, Saskia M. F., Loonen, Jacqueline J., Mulder, Renée L., van Kalsbeek, Rebecca J., Hjorth, Lars, Follin, Cecilia, Eriksson, Lill, Relander, Thomas, Engellau, Jacob, Fjordén, Karin, Bogefors, Karolina, Holmqvist, Anna S., Haupt, Riccardo, Muraca, Monica, Nicolas, Brigitte, Bagnasco, Francesca, Benvenuto, Marina, Aulicino, Anna, Laudisi, Luca, Hrstkova, Hana, Bajciova, Viera, Holikova, Marta, Strublova, Lucie, Uyttebroeck, Anne, Renard, Marleen, Jacobs, Sandra, Segers, Heidi, van Helvoirt, Monique, Winther, Jeanette F., Mader, Luzius, Frederiksen, Line E., Andersen, Elisabeth A. W., Michel, Gisela, Boes, Stefan, Roser, Katharina, Göttgens, Irene, Stollman, Iridi, Penson, Adriaan, Breij, Dionne, Araujo-Soares, Vera, Essiaf, Samira, Blondeel, Anne, Sciberras, William, Korevaar, Joke, Rijken, Mieke, Kienesberger, Anita, den Hartogh, Jaap, Gsell, Hannah, Schneider, Carina, Bardi, Edit, te Dorsthorst, Jeroen, CCA - Cancer Treatment and Quality of Life, Amsterdam Reproduction & Development (AR&D), Paediatric Oncology, and Paediatrics

Subjects
Physical activity, Motivational interviewing, Medicine (miscellaneous), Person-centred care, Feasibility, and young adult cancer survivors, Coaching, Lifestyle, Childhood, Women's cancers Radboud Institute for Health Sciences [Radboudumc 17], Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18], Diet, Screen-to-screen, All institutes and research themes of the Radboud University Medical Center, adolescent, eHealth, Rare cancers Radboud Institute for Health Sciences [Radboudumc 9], Childhood, adolescent, and young adult cancer survivors
Abstract

Background Physical inactivity and unhealthy dietary habits are known to be disadvantageous for the development of late adverse effects in survivors of childhood, adolescent, and young adult cancer. To make interventions, aimed at improving lifestyle, fit into the daily life of survivors, interventions should be designed and delivered in a person-centred way with a limited time burden. As part of the European PanCareFollowUp project, an eHealth intervention was developed to support sustainable changes to physical activity levels and/or diet of childhood, adolescent, and young adult cancer survivors. This feasibility study aims to gain insight into the feasibility and potential effect sizes of the PanCareFollowUp lifestyle intervention. Methods The PanCareFollowUp lifestyle intervention consists of person-centred 3–6 screen-to-screen sessions with a certified lifestyle coach. The intervention will be evaluated with a single-arm pre-post feasibility study conducted at two survivorship care clinics in the Netherlands. A total of 60 participants who are (i) diagnosed with cancer Discussion Data of this study will be gathered to assess the feasibility and potential effect sizes. This will allow for further intervention refinement as needed as well as to inform a future large-scale intervention study and a manual for implementation at other centres. Trial registration International Clinical Trial Registry Platform (ICTRP) number: NL8932 (ICTRP Search Portal (who.int)). Registered on September 29, 2020.

Published
2022

25. Online cognitive-behavioral group intervention for young adult survivors of childhood cancer: a pilot study.

Author

van Erp, Loes M. E., Maurice-Stam, Heleen, Beek, Laura R., Kremer, Leontien C. M., den Hartogh, Jaap G., van Gorp, Marloes, Huizinga, Gea A., and Grootenhuis, Martha A.

Subjects
CANCER patient psychology, PILOT projects, WELL-being, AFFINITY groups, TEACHING methods, INTERNET, MEDICAL care, COGNITION, PATIENT satisfaction, BEHAVIOR therapy, PSYCHOEDUCATION, SATISFACTION, HEALTH outcome assessment, CHILD behavior, TUMORS in children, TREATMENT effectiveness, PRE-tests & post-tests, T-test (Statistics), SELF-efficacy, ACCEPTANCE & commitment therapy, RESEARCH funding, QUESTIONNAIRES, PSYCHOLOGICAL adaptation, GROUP psychotherapy, PSYCHOLOGICAL distress, ADULTS
Abstract

Young adult childhood cancer survivors (YACCS) are a vulnerable group in need of psychosocial support, but tailored interventions are lacking. To examine feasibility and satisfaction, and to explore preliminary effectiveness of an online group intervention (Op Koers Online for YACCS) aimed at teaching active coping skills and providing peer-contact, thereby reducing and preventing psychosocial problems in YACCS. The intervention is based on psycho-education, cognitive behavioral therapy, and aspects of acceptance and commitment therapy. YACCS completed questionnaires pre- and post-intervention. Feasibility was based on attendance, drop-out, and an evaluation questionnaire was administered to assess satisfaction. Preliminary effectiveness was evaluated with the Mastery Scale, Illness Cognition Questionnaire, Distress Thermometer, Impact of Cancer - Childhood Survivors, and Pediatric Quality of Life Inventory. Preliminary effectiveness was investigated by testing differences on the psychosocial outcomes (coping and psychosocial wellbeing) between T0 and T1 within respondents, using paired samples t tests and Cohen's d. 10 YACCS participated in the intervention and completed all questionnaires. There was no drop-out; 90% of participants attended five out of six sessions. Overall, participants were satisfied with the intervention; 7.6 on a 0-10 scale. Distress (Cohen's d=-.6, p=.030) and feelings of helplessness (Cohen's d=-.8, p=.001) reduced from T0 to T1, while self-efficacy (Cohen's d=.8, p=.013,) improved. Other outcomes displayed small effects, but did not change significantly. This first, small pilot study showed short-term decrease in distress and feelings of helplessness and improvement of self-efficacy. Op Koers Online was positively evaluated by YACCS and course leaders, filling a gap in psychosocial services for YACCS. [ABSTRACT FROM AUTHOR]

Published
2023
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26. Modifiable Risk Factors Are Associated with Reduced Bone Mineral Density and Fractures in a National Cohort of 2,003 Dutch Childhood Cancer Survivors

Author

de Winter, Demi T.C., primary, Van Atteveld, Jenneke E., additional, Pluimakers, Vincent G., additional, Fiocco, Marta, additional, Nievelstein, Rutger A.J., additional, Hobbelink, Monique G.G., additional, de Vries, Andrica C.H., additional, Loonen, Jacqueline J., additional, Van Dulmen-den Broeder, Eline, additional, van der Pal, Helena J., additional, Pluijm, Saskia M.F., additional, Kremer, Leontien C.M., additional, Ronckers, Cécile M., additional, van der Heiden-van der Loo, Margriet, additional, Versluys, Birgitta, additional, Louwerens, Marloes, additional, Bresters, Dorine, additional, van Santen, Hanneke M., additional, Olsson, Daniel S., additional, Hoefer, Imo, additional, van den Berg, Sjoerd A.A., additional, den Hartogh, Jaap, additional, Tissing, Wim J.E., additional, Neggers, Sebastian J.C.M.M., additional, and van den Heuvel-Eibrink, Marry M., additional

Published
2022
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27. Childhood cancer survivorship care during the COVID-19 pandemic: an international report of practice implications and provider concerns

Author

Van den Oever, Selina R., Pluijm, Saskia M. F., Skinner, Rod, Glaser, Adam, Mulder, Renée L., Armenian, Saro, Bardi, Edit, Berger, Claire, Erhardt, Matthew J., Gilleland Marchak, Jordan, Haeusler, Gabrielle M., den Hartogh, Jaap, Hjorth, Lars, Kepak, Tomas, Kriviene, Izolda, Langer, Thorsten, Maeda, Miho, Márquez-Vega, Catalina, Michel, Gisela, Muraca, Monica, Najib MU, Mohamed, Nathan, Paul C., Panasiuk, Anna, Prasad, Maya, Roganovic, Jelena, Uyttebroeck, Anne, Winther, Jeannette F., Zodravec Zaletel, Lorna, van Dalen, Elvira C., van der Pal, Helena, Hudson, Melissa M., Kremer, Leontien C. M., Van den Oever, Selina R., Pluijm, Saskia M. F., Skinner, Rod, Glaser, Adam, Mulder, Renée L., Armenian, Saro, Bardi, Edit, Berger, Claire, Erhardt, Matthew J., Gilleland Marchak, Jordan, Haeusler, Gabrielle M., den Hartogh, Jaap, Hjorth, Lars, Kepak, Tomas, Kriviene, Izolda, Langer, Thorsten, Maeda, Miho, Márquez-Vega, Catalina, Michel, Gisela, Muraca, Monica, Najib MU, Mohamed, Nathan, Paul C., Panasiuk, Anna, Prasad, Maya, Roganovic, Jelena, Uyttebroeck, Anne, Winther, Jeannette F., Zodravec Zaletel, Lorna, van Dalen, Elvira C., van der Pal, Helena, Hudson, Melissa M., and Kremer, Leontien C. M.

Abstract

Purpose: Long-term follow-up (LTFU) care is essential to optimise health outcomes in childhood cancer survivors (CCS). We aimed to assess the impact of the COVID-19 pandemic on LTFU services and providers. Methods: A COVID-19 working group within the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) distributed a questionnaire to LTFU service providers in 37 countries across Europe, Asia, North America, Central/South America, and Australia. The questionnaire assessed how care delivery methods changed during the pandemic and respondents' level of worry about the pandemic's impact on LTFU care delivery, their finances, their health, and that of their family and friends. Results: Among 226 institutions, providers from 178 (79%) responded. Shortly after the initial outbreak, 42% of LTFU clinics closed. Restrictions during the pandemic resulted in fewer in-person consultations and an increased use of telemedicine, telephone, and email consultations. The use of a risk assessment to prioritise the method of LTFU consultation for individual CCS increased from 12% to 47%. While respondents anticipated in-person consultations to remain the primary method for LTFU service delivery, they expected significantly increased use of telemedicine and telephone consultations after the pandemic. On average, respondents reported highest levels of worry about psychosocial well-being of survivors. Conclusions: The pandemic necessitated changes in LTFU service delivery, including greater use of virtual LTFU care and risk-stratification to identify CCS that need in-person evaluations., + ID der Publikation: unilu_56897 + Sprache: Englisch + Letzte Aktualisierung: 2022-01-24 15:04:24

Published
2022

28. Questionnaire‐ and linkage‐based outcomes in Dutch childhood cancer survivors: Methodology of the DCCSS LATER study part 1.

Author

Teepen, Jop C., Kok, Judith L., Feijen, Elizabeth A. M., Loonen, Jacqueline J., van den Heuvel‐Eibrink, Marry M., van der Pal, Helena J., Tissing, Wim J. E., Bresters, Dorine, Versluys, Birgitta, Grootenhuis, Martha A., Louwerens, Marloes, Neggers, Sebastian J. C. M. M., van Santen, Hanneke M., de Vries, Andrica, Janssens, Geert O., den Hartogh, Jaap G., van Leeuwen, Flora E., Hollema, Nynke, Streefkerk, Nina, and Kilsdonk, Ellen

Subjects
CHILDHOOD cancer, CANCER survivors, MEDICAL registries, MEDICAL care use, PEDIATRIC oncology, CANCER fatigue
Abstract

Background: Childhood cancer survivors are at risk for developing long‐term adverse health outcomes. To identify the risk of and risk factors for specific health outcomes, well‐established cohorts are needed with detailed information on childhood cancer diagnosis, treatment, and health outcomes. We describe the design, methodology, characteristics, and data availability of the Dutch Childhood Cancer Survivor Study LATER cohort (1963–2001) part 1; questionnaire and linkage studies. Methods: The LATER cohort includes 5‐year childhood cancer survivors, diagnosed in the period 1963–2001, and before the age of 18 in any of the seven former pediatric oncology centers in the Netherlands. Information on health outcomes from survivors and invited siblings of survivors was collected by questionnaires and linkages to medical registries. Results: In total, 6165 survivors were included in the LATER cohort. Extensive data on diagnosis and treatment have been collected. Information on a variety of health outcomes has been ascertained by the LATER questionnaire study and linkages with several registries for subsequent tumors, health care use, and hospitalizations. Conclusion: Research with data of the LATER cohort will provide new insights into risks of and risk factors for long‐term health outcomes. This can enhance risk stratification for childhood cancer survivors and inform surveillance guidelines and development of interventions to prevent (the impact of) long‐term adverse health outcomes. The data collected will be a solid baseline foundation for future follow‐up studies. [ABSTRACT FROM AUTHOR]

Published
2023
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29. The PanCareFollowUp Care Intervention: A European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer

Author

van Kalsbeek, Rebecca J., primary, Mulder, Renée L., additional, Haupt, Riccardo, additional, Muraca, Monica, additional, Hjorth, Lars, additional, Follin, Cecilia, additional, Kepak, Tomas, additional, Kepakova, Katerina, additional, Uyttebroeck, Anne, additional, Mangelschots, Marlies, additional, Falck Winther, Jeanette, additional, Loonen, Jacqueline J., additional, Michel, Gisela, additional, Bardi, Edit, additional, Elmerdahl Frederiksen, Line, additional, den Hartogh, Jaap, additional, Mader, Luzius, additional, Roser, Katharina, additional, Schneider, Carina, additional, Brown, Morven C., additional, Brunhofer, Melanie, additional, Göttgens, Irene, additional, Hermens, Rosella P.M.G., additional, Kienesberger, Anita, additional, Korevaar, Joke C., additional, Skinner, Roderick, additional, van der Pal, Helena J.H., additional, and Kremer, Leontine C.M., additional

Published
2022
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30. The European multistakeholder PanCareFollowUp project: novel, person-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for cancer survivors and caregivers

Author

van Kalsbeek, Rebecca J., primary, van der Pal, Helena J.H., additional, Hjorth, Lars, additional, Winther, Jeanette F., additional, Michel, Gisela, additional, Haupt, Riccardo, additional, Uyttebroeck, Anne, additional, O'Brien, Kylie, additional, Kepakova, Katerina, additional, Follin, Cecilia, additional, Muraca, Monica, additional, Kepak, Tomas, additional, Araujo-Soares, Vera, additional, Bardi, Edit, additional, Blondeel, Anne, additional, Bouwman, Eline, additional, Brown, Morven C., additional, Frederiksen, Line E., additional, Essiaf, Samira, additional, Hermens, Rosella P.M.G., additional, Kienesberger, Anita, additional, Korevaar, Joke C., additional, Mader, Luzius, additional, Mangelschots, Marlies, additional, Mulder, Renée L., additional, van den Oever, Selina, additional, Rijken, Mieke, additional, Roser, Katharina, additional, Skinner, Rod, additional, Pluijm, Saskia M.F., additional, Loonen, Jacqueline J., additional, Kremer, Leontien C.M., additional, Van der Pal, Helena J.H., additional, van Kalsbeek, Rebecca J., additional, Van den Oever, Selina R., additional, Eriksson, Lill, additional, Relander, Thomas, additional, Engellau, Jacob, additional, Fjordén, Karin, additional, Bogefors, Karolina, additional, Holmqvist, Anna Säll fors, additional, Nicolas, Brigitte, additional, Bagnasco, Francesca, additional, Benvenuto, Marina, additional, Aulicino, Anna, additional, Laudisi, Luca, additional, Hrstkova, Hana, additional, Bajciova, Viera, additional, Holikova, Marta, additional, Strublova, Lucie, additional, Renard, Marleen, additional, Jacobs, Sandra, additional, Segers, Heidi, additional, Van Helvoirt, Monique, additional, Winther, Jeanette Falck, additional, Frederiksen, Line Elmerdahl, additional, Andersen, Elisabeth Anne Wreford, additional, Boes, Stefan, additional, Loonen, Jacqueline, additional, Hermens, Rosella, additional, Göttgens, Irene, additional, Stollman, Iridi, additional, Penson, Adriaan, additional, Skinner, Roderick, additional, Sciberras, William, additional, Korevaar, Joke, additional, Den Hartogh, Jaap, additional, Gsell, Hannah, additional, Schneider, Carina, additional, Hartogh, Jaap den, additional, and Te Dorsthorst, Jeroen, additional

Published
2021
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31. Clinical characteristics of subsequent histologically confirmed meningiomas in long-term childhood cancer survivors: A Dutch LATER study

Author

Verbruggen, Lisanne C., primary, Kok, Judith L., additional, Teepen, Jop C., additional, Janssens, Geert O., additional, de Boer, Charlotte M., additional, Stalpers, Lukas J.A., additional, Vernooij, Meike W., additional, van Dulmen-den Broeder, Eline, additional, Loonen, Jacqueline J., additional, van den Heuvel-Eibrink, Marry M., additional, Tissing, Wim J.E., additional, van der Heiden-van der Loo, Margriet, additional, Versluys, Anne Birgitta, additional, Neggers, Sebastian J.C.M.M., additional, van Leeuwen, Flora E., additional, Hoving, Eelco W., additional, Wesseling, Pieter, additional, Kremer, Leontine C.M., additional, Ronckers, Cécile M., additional, van der Pal, Helena J.H., additional, Louwerens, Marloes, additional, de Vries, Andrica, additional, Jaspers, Monique, additional, Hollema, Nynke, additional, den Hartogh, Jaap, additional, and Schouten-van Meeteren, Netteke, additional

Published
2021
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32. European PanCareFollowUp Recommendations for surveillance of late effects of childhood, adolescent, and young adult cancer

Author

Zorg en O&O, van Kalsbeek, Rebecca J., van der Pal, Helena J. H., Kremer, Leontien C. M., Bardi, Edit, Brown, Morven C., Effeney, Rachel, Winther, Jeanette F., Follin, Cecilia, den Hartogh, Jaap, Haupt, Riccardo, Hjorth, Lars, Kepak, Tomas, Kepakova, Katerina, Levitt, Gill, Loonen, Jacqueline J., Mangelschots, Marlies, Muraca, Monica, Renard, Marleen, Sabic, Harun, Schneider, Carina U., Uyttebroeck, Anne, Skinner, Roderick, Mulder, Renee L., Zorg en O&O, van Kalsbeek, Rebecca J., van der Pal, Helena J. H., Kremer, Leontien C. M., Bardi, Edit, Brown, Morven C., Effeney, Rachel, Winther, Jeanette F., Follin, Cecilia, den Hartogh, Jaap, Haupt, Riccardo, Hjorth, Lars, Kepak, Tomas, Kepakova, Katerina, Levitt, Gill, Loonen, Jacqueline J., Mangelschots, Marlies, Muraca, Monica, Renard, Marleen, Sabic, Harun, Schneider, Carina U., Uyttebroeck, Anne, Skinner, Roderick, and Mulder, Renee L.

Published
2021

33. Fertility preservation for male patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

Mulder, Renée L, primary, Font-Gonzalez, Anna, additional, Green, Daniel M, additional, Loeffen, Erik A H, additional, Hudson, Melissa M, additional, Loonen, Jacqueline, additional, Yu, Richard, additional, Ginsberg, Jill P, additional, Mitchell, Rod T, additional, Byrne, Julianne, additional, Skinner, Roderick, additional, Anazodo, Antoinette, additional, Constine, Louis S, additional, de Vries, Andrica, additional, Jahnukainen, Kirsi, additional, Lorenzo, Armando, additional, Meissner, Andreas, additional, Nahata, Leena, additional, Dinkelman-Smit, Marij, additional, Tournaye, Herman, additional, Haupt, Riccardo, additional, van den Heuvel-Eibrink, Marry M, additional, van Santen, Hanneke M, additional, van Pelt, Ans M M, additional, Dirksen, Uta, additional, den Hartogh, Jaap, additional, van Dulmen-den Broeder, Eline, additional, Wallace, W Hamish, additional, Levine, Jennifer, additional, Tissing, Wim J E, additional, Kremer, Leontien C M, additional, Kenney, Lisa B, additional, van de Wetering, Marianne D, additional, Berger, Claire, additional, Diesch, Tamara, additional, Giwercman, Aleksander, additional, Grabow, Desiree, additional, Gracia, Clarisa, additional, Hunter, Sarah E, additional, Inthorn, Julia, additional, Kaatsch, Peter, additional, Kelvin, Joanne F, additional, Klosky, James L, additional, Laven, Joop S E, additional, Lockart, Barbara A, additional, Neggers, Sebastian JCMM, additional, Paul, Norbert W, additional, Peate, Michelle, additional, Phillips, Bob, additional, Quinn, Gwendolyn P, additional, Reed, Damon R, additional, Tinner, Eva Maria E, additional, van den Berg, Marleen, additional, and Verhaak, Chris, additional

Published
2021
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34. Guidance regarding COVID‐19 for survivors of childhood, adolescent, and young adult cancer: A statement from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

Verbruggen, Lisanne C., primary, Wang, Yuehan, additional, Armenian, Saro H., additional, Ehrhardt, Matthew J., additional, van der Pal, Helena J.H., additional, van Dalen, Elvira C., additional, van As, Jorrit W., additional, Bardi, Edit, additional, Baust, Katja, additional, Berger, Claire, additional, Castagnola, Elio, additional, Devine, Katie A., additional, Gebauer, Judith, additional, Marchak, Jordan Gilleland, additional, Glaser, Adam W., additional, Groll, Andreas H., additional, Haeusler, Gabrielle M., additional, den Hartogh, Jaap, additional, Haupt, Riccardo, additional, Hjorth, Lars, additional, Kato, Miho, additional, Kepák, Tomáš, additional, Koopman, Maria M.W. (Rianne), additional, Langer, Thorsten, additional, Maeda, Miho, additional, Michel, Gisela, additional, Muraca, Monica, additional, Nathan, Paul C., additional, van den Oever, Selina R., additional, Pavasovic, Vesna, additional, Sato, Satomi, additional, Schulte, Fiona, additional, Sung, Lillian, additional, Tissing, Wim, additional, Uyttebroeck, Anne, additional, Mulder, Renée L., additional, Kuehni, Claudia, additional, Skinner, Roderick, additional, Hudson, Melissa M., additional, and Kremer, Leontien C.M., additional

Published
2020
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35. The ‘Survivorship Passport’ for childhood cancer survivors

Author

Haupt, Riccardo, primary, Essiaf, Samira, additional, Dellacasa, Chiara, additional, Ronckers, Cecile M., additional, Caruso, Silvia, additional, Sugden, Elaine, additional, Zadravec Zaletel, Lorna, additional, Muraca, Monica, additional, Morsellino, Vera, additional, Kienesberger, Anita, additional, Blondeel, Anne, additional, Saraceno, Davide, additional, Ortali, Maurizio, additional, Kremer, Leontien C.M., additional, Skinner, Roderick, additional, Roganovic, Jelena, additional, Bagnasco, Francesca, additional, Levitt, Gill A., additional, De Rosa, Marisa, additional, Schrappe, Martin, additional, Hjorth, Lars, additional, Ladenstein, Ruth, additional, Menoni, Stefania, additional, Bergeron, Christophe, additional, den Hartogh, Jaap, additional, Karner, Sabine, additional, Fresneau, Brice, additional, Jones, Kathy Pritchard, additional, Vassal, Gilles, additional, Bode, Gerlind, additional, Frey, Eva, additional, Hennewig, Ulrike, additional, Iris, Maia, additional, Jakab, Zsuzsanna, additional, Kosmidis, Helen, additional, Kriviene, Izolda, additional, Marquez, Catalina, additional, Modan-Moses, Dalit, additional, Panasiuk, Anna, additional, and Vetsch, Janine, additional

Published
2018
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36. Long-term survivors of childhood cancer: cure and care—the Erice Statement (2006) revised after 10 years (2016)

Author

Jankovic, M, Haupt, R, Spinetta, J, Beck, J, Byrne, J, Calaminus, G, Lackner, H, Biondi, A, Oeffinger, K, Hudson, M, Skinner, R, Reaman, G, van der Pal, H, Kremer, L, Den Hartogh, J, Michel, G, Frey, E, Bardi, E, Hawkins, M, Rizvi, K, Terenziani, M, Valsecchi, M, Bode, G, Jenney, M, de Vathaire, F, Garwicz, S, Levitt, G, Grabow, D, Kuehni, C, Schrappe, M, Hjorth, L, Jankovic, Momcilo, Haupt, Riccardo, Spinetta, John J., Beck, Joern D., Byrne, Julianne, Calaminus, Gabriele, Lackner, Herwig, Biondi, Andrea, Oeffinger, Kevin, Hudson, Melissa, Skinner, Roderick, Reaman, Gregory, van der Pal, Helena, Kremer, Leontien, Den Hartogh, Jaap, Michel, Gisela, Frey, Eva, Bardi, Edit, Hawkins, Michael, Rizvi, Katie, Terenziani, Monica, Valsecchi, Maria Grazia, Bode, Gerlind, Jenney, Meriel, de Vathaire, Florent, Garwicz, Stanislaw, Levitt, Gill A., Grabow, Desiree, Kuehni, Claudia E., Schrappe, Martin, Hjorth, Lars, Jankovic, M, Haupt, R, Spinetta, J, Beck, J, Byrne, J, Calaminus, G, Lackner, H, Biondi, A, Oeffinger, K, Hudson, M, Skinner, R, Reaman, G, van der Pal, H, Kremer, L, Den Hartogh, J, Michel, G, Frey, E, Bardi, E, Hawkins, M, Rizvi, K, Terenziani, M, Valsecchi, M, Bode, G, Jenney, M, de Vathaire, F, Garwicz, S, Levitt, G, Grabow, D, Kuehni, C, Schrappe, M, Hjorth, L, Jankovic, Momcilo, Haupt, Riccardo, Spinetta, John J., Beck, Joern D., Byrne, Julianne, Calaminus, Gabriele, Lackner, Herwig, Biondi, Andrea, Oeffinger, Kevin, Hudson, Melissa, Skinner, Roderick, Reaman, Gregory, van der Pal, Helena, Kremer, Leontien, Den Hartogh, Jaap, Michel, Gisela, Frey, Eva, Bardi, Edit, Hawkins, Michael, Rizvi, Katie, Terenziani, Monica, Valsecchi, Maria Grazia, Bode, Gerlind, Jenney, Meriel, de Vathaire, Florent, Garwicz, Stanislaw, Levitt, Gill A., Grabow, Desiree, Kuehni, Claudia E., Schrappe, Martin, and Hjorth, Lars

Abstract

Purpose: The number of persons who have successfully completed treatment for a cancer diagnosed during childhood and who have entered adulthood is increasing over time, and former patients will become aging citizens. Methods: Ten years ago, an expert panel met in Erice, Italy, to produce a set of principles concerning the cure and care of survivors of childhood and adolescent cancer. The result was the Erice Statement (Haupt et al. Eur J Cancer 43(12):1778–80, 2007) that was translated into nine languages. Ten years on, it was timely to review, and possibly revise, the Erice Statement in view of the changes in paediatric oncology and the number and results of international follow-up studies conducted during the intervening years. Results: The long-term goal of the cure and care of a child with cancer is that he/she becomes a resilient and autonomous adult with optimal health-related quality of life, accepted in society at the same level as his/her age peers. “Cure” refers to cure from the original cancer, regardless of any potential for, or presence of, remaining disabilities or side effects of treatment. The care of a child with cancer should include complete and honest information for parents and the child. Conclusions and implication for cancer survivors: Some members of the previous expert panel, as well as new invited experts, met again in Erice to review the Erice Statement, producing a revised version including update and integration of each of the ten points. In addition, a declaration has been prepared, by the Childhood Cancer International Survivors Network in Dublin on October 2016 (see Annex 1).

Published
2018

38. Author Correction: A joint international consensus statement for measuring quality of survival for patients with childhood cancer

Author

van Kalsbeek, Rebecca J., Hudson, Melissa M., Mulder, Renée L., Ehrhardt, Matthew, Green, Daniel M., Mulrooney, Daniel A., Hakkert, Jessica, den Hartogh, Jaap, Nijenhuis, Anouk, van Santen, Hanneke M., Schouten-van Meeteren, Antoinette Y. N., van Tinteren, Harm, Verbruggen, Lisanne C., Conklin, Heather M., Jacola, Lisa M., Webster, Rachel Tillery, Partanen, Marita, Kollen, Wouter J. W., Grootenhuis, Martha A., Pieters, Rob, and Kremer, Leontien C. M.

Published
2023
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39. Guidance regarding COVID-19 for survivors of childhood, adolescent, and young adult cancer: A statement from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

Verbruggen, Lisanne C, Wang, Yuehan, Armenian, Saro H, Ehrhardt, Matthew J, Van Der Pal, Helena J H, Van Dalen, Elvira C, Van As, Jorrit W, Bardi, Edit, Baust, Katja, Berger, Claire, Castagnola, Elio, Devine, Katie A, Gebauer, Judith, Marchak, Jordan Gilleland, Glaser, Adam W, Groll, Andreas H, Haeusler, Gabrielle M, Den Hartogh, Jaap, Haupt, Riccardo, Hjorth, Lars, Kato, Miho, Kepák, Tomáš, Koopman, Maria M W Rianne, Langer, Thorsten, Maeda, Miho, Michel, Gisela, Muraca, Monica, Nathan, Paul C, Van Den Oever, Selina R, Pavasovic, Vesna, Sato, Satomi, Schulte, Fiona, Sung, Lillian, Tissing, Wim, Uyttebroeck, Anne, Mulder, Renée L, Kuehni, Claudia, Skinner, Roderick, Hudson, Melissa M, and Kremer, Leontien C M

Subjects
610 Medicine & health, 360 Social problems & social services, 3. Good health
Abstract

Childhood, adolescent, and young adult (CAYA) cancer survivors may be at risk for a severe course of COVID-19. Little is known about the clinical course of COVID-19 in CAYA cancer survivors, or if additional preventive measures are warranted. We established a working group within the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) to summarize existing evidence and worldwide recommendations regarding evidence about factors/conditions associated with risk for a severe course of COVID-19 in CAYA cancer survivors, and to develop a consensus statement to provide guidance for healthcare practitioners and CAYA cancer survivors regarding COVID-19.

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