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1. Positive and negative survivor-specific psychosocial consequences of childhood cancer: the DCCSS-LATER 2 psycho-oncology study

Author

Maas, Anne, Maurice-Stam, Heleen, van der Aa-van Delden, Alied M., van Dalen, Elvira C., van Dulmen-den Broeder, Eline, Tissing, Wim J. E., Loonen, Jacqueline J., van der Pal, Helena J. H., de Vries, Andrica C. H., van den Heuvel-Eibrink, Marry M., Janssens, Geert O., Ronckers, Cécile, Neggers, Sebastian, Bresters, Dorine, Louwerens, Marloes, Versluys, Birgitta A. B., van der Heiden-van der Loo, Margriet, Kremer, Leontien C. M., van Gorp, Marloes, and Grootenhuis, Martha A.

Published
2024
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2. The impact of clinically relevant health conditions on psychosocial outcomes in survivors of childhood cancer: results of the DCCSS-LATER study

Author

Maas, Anne, Maurice-Stam, Heleen, Feijen, Lieke E.A.M., Teepen, Jop C., van der Aa-van Delden, Alied M., Streefkerk, Nina, van Dulmen-den Broeder, Eline, Tissing, Wim J. E., Loonen, Jacqueline J., van der Pal, Helena J. H., de Vries, Andrica C. H., van den Heuvel-Eibrink, Marry M., Ronckers, Cécile, Neggers, Sebastian, Bresters, Dorine, Louwerens, Marloes, Versluys, Birgitta A. B., van der Heiden-van der Loo, Margriet, Kremer, Leontien C. M., and Grootenhuis, Martha

Published
2024
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3. Barriers and facilitators to implementation of the interoperable Survivorship Passport (SurPass) v2.0 in 6 European countries: a PanCareSurPass online survey study

Author

van den Oever, Selina R., de Beijer, Ismay A. E., Kremer, Leontien C. M., Alfes, Marie, Balaguer, Julia, Bardi, Edit, Nieto, Adela Cañete, Cangioli, Giorgio, Charalambous, Eliana, Chronaki, Catherine, Costa, Tiago, Degelsegger, Alexander, Düster, Vanessa, Filbert, Anna-Liesa, Grabow, Desiree, Gredinger, Gerald, Gsell, Hannah, Haupt, Riccardo, van Helvoirt, Maria, Ladenstein, Ruth, Langer, Thorsten, Laschkolnig, Anja, Muraca, Monica, Rascon, Jelena, Schreier, Günter, Tomasikova, Zuzana, Tormo, Maria Teresa, Trinkunas, Justas, Trollip, Jessica, Trunner, Kathrin, Uyttebroeck, Anne, van der Pal, Helena J. H., and Pluijm, Saskia M. F.

Published
2024
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4. Increased risk of subsequent neoplasm after hematopoietic stem cell transplantation in 5-year survivors of childhood acute lymphoblastic leukemia

Author

Westerveld, Aimée S. R., Roesthuis, Pien, van der Pal, Helena J. H., Bresters, Dorine, Bierings, Marc, Loonen, Jacqueline, de Vries, Andrica C. H., Louwerens, Marloes, Koopman, Maria M. W., van den Heuvel-Eibrink, Marry M., van der Heiden-van der Loo, Margriet, Hoogerbrugge, Peter, Janssens, Geert O., de Krijger, Ronald R., Ronckers, Cecile M., Pieters, Rob, Kremer, Leontien C. M., and Teepen, Jop C.

Published
2024
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5. European recommendations for short-term surveillance of health problems in childhood, adolescent and young adult cancer survivors from the end of treatment to 5 years after diagnosis: a PanCare guideline

Author

de Beijer, Ismay A. E., Skinner, Roderick, Haupt, Riccardo, Grabow, Desiree, Bardi, Edit, Beccaria, Andrea, Nieto, Adela Cañete, Essiaf, Samira, Filbert, Anna-Liesa, Gsell, Hannah, Kienesberger, Anita, Langer, Thorsten, McColgan, Patricia, Muraca, Monica, Rascon, Jelena, Tallone, Ramona, Tomasikova, Zuzana, Uyttebroeck, Anne, Kremer, Leontien C. M., van der Pal, Helena J. H., and Mulder, Renée L.

Published
2023
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6. Effect of Web-Based Versus Paper-Based Questionnaires and Follow-Up Strategies on Participation Rates of Dutch Childhood Cancer Survivors: A Randomized Controlled Trial

Author

Kilsdonk, Ellen, van Dulmen-den Broeder, Eline, van der Pal, Helena J, Hollema, Nynke, Kremer, Leontien C, van den Heuvel-Eibrink, Marry M, van Leeuwen, Flora E, Jaspers, Monique W, and van den Berg, Marleen H

Subjects
Neoplasms. Tumors. Oncology. Including cancer and carcinogens, RC254-282
Abstract

BackgroundQuestionnaires are widely used in survey research, especially in cohort studies. However, participation in questionnaire studies has been declining over the past decades. Because high participation rates are needed to limit the risk of selection bias and produce valid results, it is important to investigate invitation strategies which may improve participation. ObjectivesThe purpose of this study is to investigate the effect of Web-based versus paper-based questionnaires on participation rates in a questionnaire survey on late effects among childhood cancer survivors (CCSs). MethodsA total of 750 CCSs were randomized across 3 study arms. The initial invitation in study arms 1 and 2 consisted of a Web-based questionnaire only, whereas in study arm 3 this invitation was complemented with a paper-based version of the questionnaire. The first postal reminder, sent to the nonresponding CCSs in all 3 study arms, consisted of either a reminder letter only (study arms 1 and 3) or a reminder letter complemented with a paper-based questionnaire (study arm 2). The second postal reminder was restricted to CCSs in study arms 1 and 2, with only those in study arm 1 also receiving a paper-based questionnaire. CCSs in study arm 3 received a second reminder by telephone instead of by mail. In contrast to CCSs in study arm 3, CCSs in study arms 1 and 2 received a third reminder, this time by telephone. ConclusionInvitation strategies offering a Web-based questionnaire without a paper-based alternative at first invitation can be used without compromising participation rates of CCS. Offering the choice between paper- and Web-based questionnaires seems to result in the highest accrual participation rate. Future research should look into the quality of the data delivered by both questionnaires filled in by respondents themselves. Trial RegistrationInternational Standard Randomized Controlled Trial Number (ISRCTN): 84711754; http://www.controlled-trials.com/ISRCTN84711754 (Archived by WebCite at http://www.webcitation.org/6c9ZB8paX)

Published
2015
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7. Interindividual variation in ovarian reserve after gonadotoxic treatment in female childhood cancer survivors – a genome-wide association study: results from PanCareLIFE

Author

van der Perk, M.E. Madeleine, Broer, Linda, Yasui, Yutaka, Laven, Joop S.E., Robison, Leslie L., Tissing, Wim J.E., Versluys, Birgitta, Bresters, Dorine, Kaspers, Gertjan J.L., Lambalk, Cornelis B., Overbeek, Annelies, Loonen, Jacqueline J., Beerendonk, Catharina C.M., Byrne, Julianne, Berger, Claire, Clemens, Eva, van Dulmen-den Broeder, Eline, Dirksen, Uta, van der Pal, Helena J., de Vries, Andrica C.H., Winther, Jeanette Falck, Ranft, Andreas, Fosså, Sophie D., Grabow, Desiree, Muraca, Monica, Kaiser, Melanie, Kepák, Tomáš, Kruseova, Jarmila, Modan-Moses, Dalit, Spix, Claudia, Zolk, Oliver, Kaatsch, Peter, Kremer, Leontien C.M., Brooke, Russell J., Wang, Fan, Baedke, Jessica L., Uitterlinden, André G., Bos, Annelies M.E., van Leeuwen, Flora E., Ness, Kirsten K., Hudson, Melissa M., van der Kooi, Anne-Lotte L.F., and van den Heuvel-Eibrink, Marry M.

Published
2024
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8. Barriers and facilitators to the implementation of a new European eHealth solution (SurPass v2.0): the PanCareSurPass Open Space study

Author

de Beijer, Ismay A. E., Hardijzer, Emma C., Haupt, Riccardo, Grabow, Desiree, Balaguer, Julia, Bardi, Edit, Cañete Nieto, Adela, Ciesiūniene, Audronė, Düster, Vanessa, Filbert, Anna-Liesa, Gsell, Hannah, Kapitančukė, Monika, Ladenstein, Ruth, Langer, Thorsten, Muraca, Monica, van den Oever, Selina R., Prikken, Sofie, Rascon, Jelena, Tormo, Maria Teresa, Uyttebroeck, Anne, Vercruysse, Gertrui, van der Pal, Helena J. H., Kremer, Leontien C. M., and Pluijm, Saskia M. F.

Published
2023
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9. Subsequent female breast cancer risk associated with anthracycline chemotherapy for childhood cancer

Author

Wang, Yuehan, Ronckers, Cécile M., van Leeuwen, Flora E., Moskowitz, Chaya S., Leisenring, Wendy, Armstrong, Gregory T., de Vathaire, Florent, Hudson, Melissa M., Kuehni, Claudia E., Arnold, Michael A., Demoor-Goldschmidt, Charlotte, Green, Daniel M., Henderson, Tara O., Howell, Rebecca M., Ehrhardt, Matthew J., Neglia, Joseph P., Oeffinger, Kevin C., van der Pal, Helena J. H., Robison, Leslie L., Schaapveld, Michael, Turcotte, Lucie M., Waespe, Nicolas, Kremer, Leontien C. M., and Teepen, Jop C.

Published
2023
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10. Using Web-Based and Paper-Based Questionnaires for Collecting Data on Fertility Issues Among Female Childhood Cancer Survivors: Differences in Response Characteristics

Author

van den Berg, Marleen H, Overbeek, Annelies, van der Pal, Helena J, Versluys, A. Birgitta, Bresters, Dorine, van Leeuwen, Flora E, Lambalk, Cornelis B, Kaspers, Gertjan J.L, and van Dulmen-den Broeder, Eline

Subjects
Computer applications to medicine. Medical informatics, R858-859.7, Public aspects of medicine, RA1-1270
Abstract

BackgroundWeb-based questionnaires have become increasingly popular in health research. However, reported response rates vary and response bias may be introduced. ObjectiveThe aim of this study was to evaluate whether sending a mixed invitation (paper-based together with Web-based questionnaire) rather than a Web-only invitation (Web-based questionnaire only) results in higher response and participation rates for female childhood cancer survivors filling out a questionnaire on fertility issues. In addition, differences in type of response and characteristics of the responders and nonresponders were investigated. Moreover, factors influencing preferences for either the Web- or paper-based version of the questionnaire were examined. MethodsThis study is part of a nationwide study on reproductive function, ovarian reserve, and risk of premature menopause in female childhood cancer survivors. The Web-based version of the questionnaire was available for participants through the Internet by means of a personalized user name and password. Participants were randomly selected to receive either a mixed invitation (paper-based questionnaire together with log-in details for Web-based questionnaire, n = 137) or a Web-only invitation (log-in details only, n = 140). Furthermore, the latter group could request a paper-based version of the questionnaire by filling out a form. ResultsOverall response rates were comparable in both randomization groups (83% mixed invitation group vs 89% in Web-only invitation group, P = .20). In addition, participation rates appeared not to differ (66% or 90/137, mixed invitation group vs 59% or 83/140, Web-only invitation group, P =.27). However, in the mixed invitation group, significantly more respondents filled out the paper-based questionnaire compared with the Web-only invitation group (83% or 75/90 and 65% or 54/83, respectively, P = .01). The 44 women who filled out the Web-based version of the questionnaire had a higher educational level than the 129 women who filled out the paper-based version (P = .01). Furthermore, the probability of filling out the Web-based questionnaire appeared to be greater for women who were allocated to the Web-only invitation group (OR = 2.85, 95% CI 1.31 - 6.21), were older (OR = 1.08, 95% CI 1.02 - 1.15), had a higher educational level (OR high vs low = 0.06, 95% CI 0.01 - 0.52), or were students (OR employed vs student = 3.25, 95% CI 1.00 - 10.56). ConclusionsAlthough overall response as well as participation rates to both types of invitations were similar, adding a paper version of a questionnaire to a Web-only invitation resulted in more respondents filling out the paper-based version. In addition, women who were older, had a higher level of education, or were students, were more likely to have filled out the Web-based version of the questionnaire. Given the many advantages of Web-based over paper-based questionnaires, researchers should strongly consider using Web-based questionnaires, although possible response bias when using these types of questionnaires should be taken into account. Trial RegistrationNederlands Trial Register NTR2922; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=2922 (Archived by WebCite at http://www.webcitation.org/5zRRdMrDv)

Published
2011
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12. Correction: Barriers and facilitators to the implementation of a new European eHealth solution (SurPass v2.0): the PanCareSurPass Open Space study

Author

de Beijer, Ismay A. E., Hardijzer, Emma C., Haupt, Riccardo, Grabow, Desiree, Balaguer, Julia, Bardi, Edit, Nieto, Adela Cañete, Ciesiūniene, Audronė, Düster, Vanessa, Filbert, Anna-Liesa, Gsell, Hannah, Kapitančukė, Monika, Ladenstein, Ruth, Langer, Thorsten, Muraca, Monica, van den Oever, Selina R., Prikken, Sofie, Rascon, Jelena, Tormo, Maria Teresa, Uyttebroeck, Anne, Vercruysse, Gertrui, van der Pal, Helena J. H., Kremer, Leontien C. M., and Pluijm, Saskia M. F.

Published
2024
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13. Risk of subsequent primary oral cancer in a cohort of 69,460 5-year survivors of childhood and adolescent cancer in Europe: the PanCareSurFup study

Author

Sunguc, Ceren, Hawkins, Michael M., Winter, David L., Dudley, Isabelle M., Heymer, Emma J., Teepen, Jop C., Allodji, Rodrigue S., Belle, Fabiën N., Bagnasco, Francesca, Byrne, Julianne, Bárdi, Edit, Ronckers, Cécile M., Haddy, Nadia, Gudmundsdottir, Thorgerdur, Garwicz, Stanislaw, Jankovic, Momcilo, van der Pal, Helena J. H., Mazić, Maja Česen, Schindera, Christina, Grabow, Desiree, Maule, Milena M., Kaatsch, Peter, Kaiser, Melanie, Fresneau, Brice, Michel, Gisela, Skinner, Roderick, Wiebe, Thomas, Sacerdote, Carlotta, Jakab, Zsuzsanna, Gunnes, Maria Winther, Terenziani, Monica, Winther, Jeanette F., Lähteenmäki, Päivi M., Zaletel, Lorna Zadravec, Kuehni, Claudia E., Kremer, Leontien C., Haupt, Riccardo, de Vathaire, Florent, Hjorth, Lars, and Reulen, Raoul C.

Published
2023
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14. 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, Ehrhardt, Matthew J., Gilleland Marchak, Jordan, Haeusler, Gabrielle M., Hartogh, Jaap den, Hjorth, Lars, Kepak, Tomas, Kriviene, Izolda, Langer, Thorsten, Maeda, Miho, Márquez-Vega, Catalina, Michel, Gisela, Muraca, Monica, Najib, Mohamed, Nathan, Paul C., Panasiuk, Anna, Prasad, Maya, Roganovic, Jelena, Uyttebroeck, Anne, Winther, Jeanette F., Zadravec Zaletel, Lorna, van Dalen, Elvira C., van der Pal, Helena J. H., Hudson, Melissa M., and Kremer, Leontien C. M.

Published
2022
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15. Self-reported outcomes on oral health and oral health-related quality of life in long-term childhood cancer survivors—A DCCSS-LATER 2 Study

Author

Stolze, Juliette, Raber-Durlacher, Judith E., Loonen, Jacqueline J., Teepen, Jop C., Ronckers, Cécile M., Tissing, Wim J. E., de Vries, Andrica C. H., Neggers, Sebastian J. C. M. M., Dulmen-den Broeder, Eline, Heuvel-Eibrink, Marry M., van der Pal, Helena J. H., Versluys, A. Birgitta, Heiden-van der Loo, Margriet, Louwerens, Marloes, Kremer, Leontien C. M., Bresters, Dorine, and Brand, Henk S.

Published
2023
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16. 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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17. Psychosocial developmental milestones of young adult survivors of childhood cancer

Author

Maurice-Stam, Heleen, van Erp, Loes M. E., Maas, Anne, van Oers, Hedy A., Kremer, Leontien C. M., van Dulmen-den Broeder, Eline, Tissing, Wim J. E., Loonen, Jacqueline J., van der Pal, Helena J. H., Beek, Laura R., de Vries, Andrica C. H., van den Heuvel-Eibrink, Marry M., Ronckers, Cécile M., Bresters, Dorine, Louwerens, Marloes, van der Heiden-van der Loo, Margriet, Huizinga, Gea A., and Grootenhuis, Martha A.

Published
2022
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19. 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., and Loonen, Jacqueline J.

Published
2022
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20. Treatments affecting splenic function as a risk factor for valvular heart disease in Childhood Cancer Survivors: A DCCSS‐LATER study.

Author

Houtman, Bente M., Walraven, Iris, Kapusta, Livia, Teske, Arco J., van Dulmen‐den Broeder, Eline, Tissing, Wim J. E., van den Heuvel‐Eibrink, Marry M., Versluys, A. B. Birgitta, Bresters, Dorine, van der Heiden‐van der Loo, Margriet, Ronckers, Cécile, Kok, Wouter E. M., van der Pal, Helena J. H., Pluijm, Saskia M. F., Janssens, Geert O., Blijlevens, Nicole M. A., Kremer, Leontien C. M., Loonen, Jacqueline J., and Feijen, E. A. M. Lieke

Published
2024
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21. Risk and Protective Factors of Psychosocial Functioning in Survivors of Childhood Cancer: Results of the DCCSS‐LATER Study.

Author

Maas, Anne, Maurice‐Stam, Heleen, Feijen, E. A. M, Teepen, Jop C., van der Aa‐van Delden, Alied M., Streefkerk, Nina, van Dulmen‐den Broeder, Eline, Tissing, Wim J. E., Loonen, Jacqueline J., van der Pal, Helena J. H., de Vries, Andrica C. H., van den Heuvel‐Eibrink, Marry M., Ronckers, Cécile, Neggers, Sebastian, Bresters, Dorine, Louwerens, Marloes, Versluys, Birgitta A. B., van der Heiden‐van der Loo, Margriet, Kremer, Leontien C. M., and Grootenhuis, Martha

Subjects
PSYCHOSOCIAL functioning, CHILDHOOD cancer, PROTECTIVE factors, QUALITY of life, PSYCHOSOCIAL factors
Abstract

Objective: This study examines the association between psychosocial risk and protective factors and a wide range of psychosocial outcomes including emotional, social, cognitive, and physical domains in childhood cancer survivors (CCS). Methods: CCS from the Dutch Childhood Cancer Survivor Study (DCCSS)‐LATER cohort (diagnosed 1963–2001) part 2 (age ≥ 18 years, diagnosed < 18 years, ≥ 5 years since diagnosis) completed questionnaires on psychosocial risk and protective factors (Benefit and Burden Scale, Illness Cognition Questionnaire, Rosenberg Self‐Esteem Scale, and Impact of Cancer Scale), and psychosocial outcomes (Hospital Anxiety and Depression Scale, Self‐Rating Scale for Post‐Traumatic Stress Disorder, TNO‐AZL Questionnaire for Adult Health‐Related Quality of Life, and Short Form‐36). Associations were assessed with regression analysis, adjusting for attained age, sex, number of health conditions, and time since diagnosis, while correcting for multiple testing (p < 0.004). Results: A total of 1382 CCS participated, all diagnosed ≥ 15 years ago. The mean age of participating CCS was 36 years, and 51% were female. Perceived benefit and burden, acceptance, and helplessness, self‐esteem and social support were associated with the psychosocial outcomes. In the models including all psychosocial factors, most associations with psychosocial outcomes were seen for self‐esteem (10×), and perceived burden (9×). Self‐esteem (all β ≤ 0.47) and perceived burden (all β ≤ 0.38) demonstrated strongest associations of medium/large size. Conclusions: Perceptions of childhood cancer, illness cognitions, self‐esteem, and social support play a role in explaining psychosocial functioning in CCS, outweighing the influence of socio‐demographic and medical variables. Addressing negative perceptions and reducing feelings of helplessness, while promoting acceptance, self‐esteem, and social support, could provide intervention targets for CCS who encounter psychosocial challenges. [ABSTRACT FROM AUTHOR]

Published
2024
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22. Surveillance for subsequent neoplasms of the CNS for childhood, adolescent, and young adult cancer survivors: a systematic review and recommendations from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

Bowers, Daniel C, Verbruggen, Lisanne C, Kremer, Leontien C M, Hudson, Melissa M, Skinner, Roderick, Constine, Louis S, Sabin, Noah D, Bhangoo, Ranjeev, Haupt, Riccardo, Hawkins, Mike M, Jenkinson, Helen, Khan, Raja B, Klimo, Paul, Jr, Pretorius, Pieter, Ng, Antony, Reulen, Raoul C, Ronckers, Cécile M, Sadighi, Zsila, Scheinemann, Katrin, Schouten-van Meeteren, Netteke, Sugden, Elaine, Teepen, Jop C, Ullrich, Nicole J, Walter, Andrew, Wallace, W Hamish, Oeffinger, Kevin C, Armstrong, Gregory T, van der Pal, Helena J H, and Mulder, Renée L

Published
2021
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23. The impact of clinically relevant health conditions on psychosocial outcomes in survivors of childhood cancer:results of the DCCSS-LATER study

Author

Maas, Anne, Maurice-Stam, Heleen, Feijen, Lieke E. A. M., Teepen, Jop C., van der Aa-van Delden, Alied M., Streefkerk, Nina, van Dulmen-den Broeder, Eline, Tissing, Wim J. E., Loonen, Jacqueline J., van der Pal, Helena J. H., de Vries, Andrica C. H., van den Heuvel-eibrink, Marry M., Ronckers, Cecile, Neggers, Sebastian, Bresters, Dorine, Louwerens, Marloes, Versluys, Birgitta A. B., van der van der Loo, Margriet, Kremer, Leontien C. M., Grootenhuis, Martha, Maas, Anne, Maurice-Stam, Heleen, Feijen, Lieke E. A. M., Teepen, Jop C., van der Aa-van Delden, Alied M., Streefkerk, Nina, van Dulmen-den Broeder, Eline, Tissing, Wim J. E., Loonen, Jacqueline J., van der Pal, Helena J. H., de Vries, Andrica C. H., van den Heuvel-eibrink, Marry M., Ronckers, Cecile, Neggers, Sebastian, Bresters, Dorine, Louwerens, Marloes, Versluys, Birgitta A. B., van der van der Loo, Margriet, Kremer, Leontien C. M., and Grootenhuis, Martha

Abstract

Purpose: Investigate the association between presence, number and type of clinically relevant health conditions and a range of psychosocial outcomes (emotional, social, cognitive, physical) in survivors of childhood cancer (CCS). Methods: CCS from the Dutch Childhood Cancer Survivor Study (DCCSS)-LATER cohort (diagnosed between 1963–2001, attained age ≥ 18, diagnosed < 18, ≥ 5 years since diagnosis) completed a questionnaire on health conditions (2013–2014), and questionnaires on psychosocial outcomes (2017–2020): Hospital Anxiety and Depression Scale, Short form 36, TNO-AZL Questionnaire for Adult Health-Related Quality of Life, and the Self-Rating Scale for Post-Traumatic Stress Disorder. Associations among health conditions and psychosocial outcomes were assessed with regression analysis, adjusting for attained age, sex, and time since diagnosis, and adjusting for multiple testing (p < 0.004). Results: A total of 1437 CCS, mean age 36.3 years, 51.1% female, ≥ 15 years since diagnosis, completed questionnaires on health and psychosocial outcomes. CCS with a clinically relevant health condition, and those with more conditions had worse emotional, social, and physical outcomes; regression coefficients were small to moderate. CCS with gastro-intestinal conditions, endocrine, nervous systems, eye, or ear conditions, and especially those with secondary malignant neoplasms, reported worse psychosocial functioning; regression coefficients were small/moderate to large. Conclusion and implications: Health care professionals should be aware of the increased risk for psychosocial problems among CCS with health conditions, especially for survivors with secondary malignant neoplasms, gastro-intestinal, endocrine, nervous system, eye, and ear conditions. CCS may benefit from psychological interventions to develop coping strategies to manage health conditions and psychosocial consequences of the cancer trajectory.

Published
2024

24. Interindividual variation in ovarian reserve after gonadotoxic treatment in female childhood cancer survivors - a genome-wide association study: results from PanCareLIFE

Author

MS VPG/Gynaecologie, Cancer, Speerpunt, Zorg en O&O, Child Health, van der Perk, M E Madeleine, Broer, Linda, Yasui, Yutaka, Laven, Joop S E, Robison, Leslie L, Tissing, Wim J E, Versluys, Birgitta, Bresters, Dorine, Kaspers, Gertjan J L, Lambalk, Cornelis B, Overbeek, Annelies, Loonen, Jacqueline J, Beerendonk, Catharina C M, Byrne, Julianne, Berger, Claire, Clemens, Eva, van Dulmen-den Broeder, Eline, Dirksen, Uta, van der Pal, Helena J, de Vries, Andrica C H, Winther, Jeanette Falck, Ranft, Andreas, Fosså, Sophie D, Grabow, Desiree, Muraca, Monica, Kaiser, Melanie, Kepák, Tomáš, Kruseova, Jarmila, Modan-Moses, Dalit, Spix, Claudia, Zolk, Oliver, Kaatsch, Peter, Kremer, Leontien C M, Brooke, Russell J, Wang, Fan, Baedke, Jessica L, Uitterlinden, André G, Bos, Annelies M E, van Leeuwen, Flora E, Ness, Kirsten K, Hudson, Melissa M, van der Kooi, Anne-Lotte L F, van den Heuvel-Eibrink, Marry M, PanCareLIFE Consortium, MS VPG/Gynaecologie, Cancer, Speerpunt, Zorg en O&O, Child Health, van der Perk, M E Madeleine, Broer, Linda, Yasui, Yutaka, Laven, Joop S E, Robison, Leslie L, Tissing, Wim J E, Versluys, Birgitta, Bresters, Dorine, Kaspers, Gertjan J L, Lambalk, Cornelis B, Overbeek, Annelies, Loonen, Jacqueline J, Beerendonk, Catharina C M, Byrne, Julianne, Berger, Claire, Clemens, Eva, van Dulmen-den Broeder, Eline, Dirksen, Uta, van der Pal, Helena J, de Vries, Andrica C H, Winther, Jeanette Falck, Ranft, Andreas, Fosså, Sophie D, Grabow, Desiree, Muraca, Monica, Kaiser, Melanie, Kepák, Tomáš, Kruseova, Jarmila, Modan-Moses, Dalit, Spix, Claudia, Zolk, Oliver, Kaatsch, Peter, Kremer, Leontien C M, Brooke, Russell J, Wang, Fan, Baedke, Jessica L, Uitterlinden, André G, Bos, Annelies M E, van Leeuwen, Flora E, Ness, Kirsten K, Hudson, Melissa M, van der Kooi, Anne-Lotte L F, van den Heuvel-Eibrink, Marry M, and PanCareLIFE Consortium

Published
2024

25. Increased risk of subsequent neoplasm after hematopoietic stem cell transplantation in 5-year survivors of childhood acute lymphoblastic leukemia

Author

Cancer, MS Radiotherapie, Pathologie Pathologen staf, Zorg en O&O, Child Health, Westerveld, Aimée S R, Roesthuis, Pien, van der Pal, Helena J H, Bresters, Dorine, Bierings, Marc, Loonen, Jacqueline, de Vries, Andrica C H, Louwerens, Marloes, Koopman, Maria M W, van den Heuvel-Eibrink, Marry M, van der Heiden-van der Loo, Margriet, Hoogerbrugge, Peter, Janssens, Geert O, de Krijger, Ronald R, Ronckers, Cecile M, Pieters, Rob, Kremer, Leontien C M, Teepen, Jop C, Cancer, MS Radiotherapie, Pathologie Pathologen staf, Zorg en O&O, Child Health, Westerveld, Aimée S R, Roesthuis, Pien, van der Pal, Helena J H, Bresters, Dorine, Bierings, Marc, Loonen, Jacqueline, de Vries, Andrica C H, Louwerens, Marloes, Koopman, Maria M W, van den Heuvel-Eibrink, Marry M, van der Heiden-van der Loo, Margriet, Hoogerbrugge, Peter, Janssens, Geert O, de Krijger, Ronald R, Ronckers, Cecile M, Pieters, Rob, Kremer, Leontien C M, and Teepen, Jop C

Published
2024

26. Interindividual variation in ovarian reserve after gonadotoxic treatment in female childhood cancer survivors – a genome-wide association study:results from PanCareLIFE

Author

van der Perk, M. E.Madeleine, Broer, Linda, Yasui, Yutaka, Laven, Joop S.E., Robison, Leslie L., Tissing, Wim J.E., Versluys, Birgitta, Bresters, Dorine, Kaspers, Gertjan J.L., Lambalk, Cornelis B., Overbeek, Annelies, Loonen, Jacqueline J., Beerendonk, Catharina C.M., Byrne, Julianne, Berger, Claire, Clemens, Eva, van Dulmen-den Broeder, Eline, Dirksen, Uta, van der Pal, Helena J., de Vries, Andrica C.H., Winther, Jeanette Falck, Ranft, Andreas, Fosså, Sophie D., Grabow, Desiree, Muraca, Monica, Kaiser, Melanie, Kepák, Tomáš, Kruseova, Jarmila, Modan-Moses, Dalit, Spix, Claudia, Zolk, Oliver, Kaatsch, Peter, Kremer, Leontien C.M., Brooke, Russell J., Wang, Fan, Baedke, Jessica L., Uitterlinden, André G., Bos, Annelies M.E., van Leeuwen, Flora E., Ness, Kirsten K., Hudson, Melissa M., van der Kooi, Anne Lotte L.F., van den Heuvel-Eibrink, Marry M., van der Perk, M. E.Madeleine, Broer, Linda, Yasui, Yutaka, Laven, Joop S.E., Robison, Leslie L., Tissing, Wim J.E., Versluys, Birgitta, Bresters, Dorine, Kaspers, Gertjan J.L., Lambalk, Cornelis B., Overbeek, Annelies, Loonen, Jacqueline J., Beerendonk, Catharina C.M., Byrne, Julianne, Berger, Claire, Clemens, Eva, van Dulmen-den Broeder, Eline, Dirksen, Uta, van der Pal, Helena J., de Vries, Andrica C.H., Winther, Jeanette Falck, Ranft, Andreas, Fosså, Sophie D., Grabow, Desiree, Muraca, Monica, Kaiser, Melanie, Kepák, Tomáš, Kruseova, Jarmila, Modan-Moses, Dalit, Spix, Claudia, Zolk, Oliver, Kaatsch, Peter, Kremer, Leontien C.M., Brooke, Russell J., Wang, Fan, Baedke, Jessica L., Uitterlinden, André G., Bos, Annelies M.E., van Leeuwen, Flora E., Ness, Kirsten K., Hudson, Melissa M., van der Kooi, Anne Lotte L.F., and van den Heuvel-Eibrink, Marry M.

Abstract

Objective: To discover new variants associated with low ovarian reserve after gonadotoxic treatment among adult female childhood cancer survivors using a genome-wide association study approach. Design: Genome-wide association study. Setting: Not applicable. Patients: A discovery cohort of adult female childhood cancer survivors from the pan-European PanCareLIFE cohort (n = 743; median age: 25.8 years), excluding those who received bilateral ovarian irradiation, bilateral oophorectomy, central nervous system or total body irradiation, or stem cell transplantation. Replication was attempted in the US-based St. Jude Lifetime Cohort (n = 391; median age: 31.3 years). Exposure: Female childhood cancer survivors are at risk of therapy-related gonadal impairment. Alkylating agents are well-established risk factors, and the interindividual variability in gonadotoxicity may be explained by genetic polymorphisms. Data were collected in real-life conditions, and cyclophosphamide equivalent doses were used to quantify alkylation agent exposure. Main Outcome Measure: Anti-Müllerian hormone (AMH) levels served as a proxy for ovarian function, and the findings were combined in a meta-analysis. Results: Three genome-wide significant (<5.0 × 10−8) and 16 genome-wide suggestive (<5.0 × 10−6) loci were associated with log-transformed AMH levels, adjusted for cyclophosphamide equivalent dose of alkylating agents, age at diagnosis, and age at study in the PanCareLIFE cohort. On the basis of the effect allele frequency (EAF) (>0.01 if not genome-wide significant), and biologic relevance, 15 single nucleotide polymorphisms were selected for replication. None of the single nucleotide polymorphisms were statistically significantly associated with AMH levels. A meta-analysis indicated that rs78861946 was associated with borderline genome-wide statistical significance (reference/effect allele: C/T; effect allele frequency: 0.04, beta (SE): −0.484 (0.091). Con

Published
2024

27. Treatments affecting splenic function as a risk factor for valvular heart disease in Childhood Cancer Survivors:A DCCSS-LATER study

Author

Houtman, Bente M., Walraven, Iris, Kapusta, Livia, Teske, Arco J., van Dulmen-den Broeder, Eline, Tissing, Wim J. E., van den Heuvel-Eibrink, Marry M., Versluys, A. B. Birgitta, Bresters, Dorine, van der Heiden-vander Loo, Margriet, Ronckers, Cecile, Kok, Wouter E. M., van der Pal, Helena J. H., Pluijm, Saskia M. F., Janssens, Geert O., Blijlevens, Nicole M. A., Kremer, Leontien C. M., Loonen, Jacqueline J., Feijen, E. A. M. Lieke, Houtman, Bente M., Walraven, Iris, Kapusta, Livia, Teske, Arco J., van Dulmen-den Broeder, Eline, Tissing, Wim J. E., van den Heuvel-Eibrink, Marry M., Versluys, A. B. Birgitta, Bresters, Dorine, van der Heiden-vander Loo, Margriet, Ronckers, Cecile, Kok, Wouter E. M., van der Pal, Helena J. H., Pluijm, Saskia M. F., Janssens, Geert O., Blijlevens, Nicole M. A., Kremer, Leontien C. M., Loonen, Jacqueline J., and Feijen, E. A. M. Lieke

Abstract

PurposeSplenectomy might be a risk factor for valvular heart disease (VHD) in adult Hodgkin lymphoma survivors. As this risk is still unclear for childhood cancer survivors (CCS), the aim of this study is to evaluate the association between treatments affecting splenic function (splenectomy and radiotherapy involving the spleen) and VHD in CCS.MethodsCCS were enrolled from the DCCSS-LATER cohort, consisting of 6,165 five-year CCS diagnosed between 1963 and 2002. Symptomatic VHD, defined as symptoms combined with a diagnostic test indicating VHD, was assessed from questionnaires and validated using medical records. Differences in the cumulative incidence of VHD between CCS who received treatments affecting splenic function and CCS who did not were assessed using the Gray test. Risk factors were analyzed in a multivariable Cox proportional hazards model.ResultsThe study population consisted of 5,286 CCS, with a median follow-up of 22 years (5-50 years), of whom 59 (1.1%) had a splenectomy and 489 (9.2%) radiotherapy involving the spleen. VHD was present in 21 CCS (0.4%). The cumulative incidence of VHD at the age of 40 years was significantly higher in CCS who received treatments affecting splenic function (2.7%, 95% confidence interval (CI) 0.4%-4.9%) compared with CCS without (0.4%, 95% CI 0.1%-0.7%) (Gray's test, p = 0.003). Splenectomy was significantly associated with VHD in a multivariable analysis (hazard ratio 8.6, 95% CI 3.1-24.1).Conclusions and implicationsSplenectomy was associated with VHD. Future research is needed to determine if CCS who had a splenectomy as part of cancer treatment might benefit from screening for VHD.

Published
2024

28. Unhealthy lifestyle behaviors, overweight, and obesity among childhood cancer survivors in the Netherlands: A DCCSS LATER study

Author

Bouwman, Eline, Penson, Adriaan, de Valk, Maud, van den Oever, Selina R., van der Pal, Helena J. H., van Dulmen‐den Broeder, Eline, Blijlevens, Nicole M. A., Bresters, Dorine, Feijen, Elizabeth A. M., van den Heuvel‐Eibrink, Marry M., van der Heiden‐van der Loo, Margriet, Michel, Gisela, Ronckers, Cécile M., Teepen, Jop C., Tissing, Wim J. E., Versluys, Birgitta A. B., Kremer, Leontien C. M., Pluijm, Saskia M. F., Loonen, Jacqueline J., Bouwman, Eline, Penson, Adriaan, de Valk, Maud, van den Oever, Selina R., van der Pal, Helena J. H., van Dulmen‐den Broeder, Eline, Blijlevens, Nicole M. A., Bresters, Dorine, Feijen, Elizabeth A. M., van den Heuvel‐Eibrink, Marry M., van der Heiden‐van der Loo, Margriet, Michel, Gisela, Ronckers, Cécile M., Teepen, Jop C., Tissing, Wim J. E., Versluys, Birgitta A. B., Kremer, Leontien C. M., Pluijm, Saskia M. F., and Loonen, Jacqueline J.

Abstract

Background The objective of this study was to examine the prevalence of unhealthy lifestyle behaviors, overweight, and obesity in Dutch childhood cancer survivors (CCSs) compared with sibling controls and the Dutch general population. Other aims were to assess associated factors of unhealthy lifestyle behaviors, overweight, and obesity and to identify subgroups of CCSs at risk for these unhealthy statuses. Methods The authors included 2253 CCSs and 906 siblings from the Dutch Childhood Cancer Survivor Study-Late Effects After Childhood Cancer cohort, part 1, and added data from the Dutch general population. Questionnaire data were collected on overweight and obesity (body mass index >25.0 kg/m2), meeting physical activity guidelines (>150 minutes per week of moderate or vigorous exercises), excessive alcohol consumption (>14 and >21 alcoholic consumptions per week for women and men, respectively), daily smoking, and monthly drug use. Multivariable logistic regression analyses and two-step cluster analyses were performed to examine sociodemographic-related, health-related, cancer-related, and treatment-related associated factors of unhealthy lifestyle behaviors and to identify subgroups of CCSs at risk for multiple unhealthy behaviors. Results CCSs more often did not meet physical activity guidelines than their siblings (30.0% vs. 19.3%; p < .001). Married as marital status, lower education level, nonstudent status, and comorbidities were common associated factors for a body mass index ≥25.0 kg/m2 and insufficient physical activity, whereas male sex and lower education were shared associated factors for excessive alcohol consumption, daily smoking, and monthly drug use. A subgroup of CCSs was identified as excessive alcohol consumers, daily smokers, and monthly drug users. Conclusions The current results emphasize the factors associated with unhealthy behaviors and the potential identification of CCSs who exhibit multiple unhealthy lifestyle b, + ID der Publikation: unilu_74706 + Sprache: Englisch + Letzte Aktualisierung: 2024-05-29 11:24:41

Published
2024

29. Different subtypes of chronic fatigue in childhood cancer survivors: A DCCSS LATER study.

Author

Penson, Adriaan, Walraven, Iris, Bronkhorst, Ewald, Grootenhuis, Martha A., Maurice‐Stam, Heleen, Loo, Margriet van der Heiden‐van der, Tissing, Wim J. E., van der Pal, Helena J. H., de Vries, Andrica C. H., Bresters, Dorine, Ronckers, Cécile M., van den Heuvel‐Eibrink, Marry M., Neggers, Sebastian, Versluys, Birgitta A. B., Louwerens, Marloes, Pluijm, Saskia M. F., Blijlevens, Nicole, van Dulmen‐den Broeder, Eline, Kremer, Leontien C. M., and Knoop, Hans

Published
2024
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31. Methodology of the DCCSS later fatigue study: a model to investigate chronic fatigue in long-term survivors of childhood cancer

Author

Penson, Adriaan, van Deuren, Sylvia, Bronkhorst, Ewald, Keizer, Ellen, Heskes, Tom, Coenen, Marieke J. H., Rosmalen, Judith G. M., Tissing, Wim J. E., van der Pal, Helena J. H., de Vries, Andrica C. H., van den Heuvel-Eibrink, Marry M., Neggers, Sebastian, Versluys, Birgitta A. B., Louwerens, Marloes, van der Heiden-van der Loo, Margriet, Pluijm, Saskia M. F., Grootenhuis, Martha, Blijlevens, Nicole, Kremer, Leontien C. M., van Dulmen-den Broeder, Eline, Knoop, Hans, and Loonen, Jacqueline

Published
2021
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34. The cumulative burden of self‐reported, clinically relevant outcomes in long‐term childhood cancer survivors and implications for survivorship care: A DCCSS LATER study.

Author

Streefkerk, Nina, Teepen, Jop C., Feijen, Elizabeth A. M., Jóźwiak, Katarzyna, van der Pal, Helena J. H., Ronckers, Cecile M., De Vries, Andrica C. H., Van der Heiden‐van Der Loo, Margriet, Hollema, Nynke, van den Berg, Marleen, Loonen, Jacqueline, Grootenhuis, Martha A., Bresters, Dorine, Versluys, A. Brigitta, van Dulmen‐den Broeder, Eline, van den Heuvel‐Eibrink, Marry M., van Leeuwen, Flora E., Neggers, Sebastian J. C. M. M., Van Santen, Hanneke M., and Hawkins, Mike

Subjects
CHILDHOOD cancer, CANCER survivors, MISSING data (Statistics), TUMOR treatment, CONFIDENCE intervals
Abstract

Background: The aim of this study is to evaluate how cumulative burden of clinically relevant, self‐reported outcomes in childhood cancer survivors (CCSs) compares to a sibling control group and to explore how the burden corresponds to levels of care proposed by existing risk stratifications. Methods: The authors invited 5925 5‐year survivors from the Dutch Childhood Cancer Survivor Study (DCCSS LATER) cohort and their 1066 siblings to complete a questionnaire on health outcomes. Health outcomes were validated by self‐reported medication use or medical record review. Missing data on clinically relevant outcomes in CCSs for whom no questionnaire data were available were imputed with predictive mean matching. We calculated the mean cumulative count (MCC) for clinically relevant outcomes. Furthermore, we calculated 30‐year MCC for groups of CCSs based on primary cancer diagnosis and treatment, ranked 30‐year MCC, and compared the ranking to levels of care according to existing risk stratifications. Results: At median 18.5 years after 5‐year survival, 46% of CCSs had at least one clinically relevant outcome. CCSs experienced 2.8 times more health conditions than siblings (30‐year MCC = 0.79; 95% confidence interval [CI], 0.74–0.85 vs. 30‐year MCC = 0.29; 95% CI, 0.25–0.34). CCSs' burden of clinically relevant outcomes consisted mainly of endocrine and vascular conditions and varied by primary cancer type. The ranking of the 30‐year MCC often did not correspond with levels of care in existing risk stratifications. Conclusions: CCSs experience a high cumulative burden of clinically relevant outcomes that was not completely reflected by current risk stratifications. Choices for survivorship care should extend beyond primary tumor and treatment parameters, and should consider also including CCSs' current morbidity. Survivors of childhood cancer experience a high cumulative burden of clinically relevant outcomes. Choices for survivorship care should extend beyond primary tumor and treatment parameters and should also consider including the current morbidity of childhood cancer survivors. [ABSTRACT FROM AUTHOR]

Published
2024
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35. Reproductive outcomes and reproductive health care utilization among male survivors of childhood cancer: A DCCSS‐LATER study.

Author

Claessens, Joyce J. M., Penson, Adriaan, Bronkhorst, Ewald M., Kremer, Leontien C. M., van Dulmen‐den Broeder, Eline, van der Heiden‐van der Loo, Margriet, Tissing, Wim J. E., van der Pal, Helena J. H., Blijlevens, Nicole M. A., van den Heuvel‐Eibrink, Marry M., Versluys, A. Birgitta, Bresters, Dorine, Ronckers, Cécile M., Walraven, Iris, Beerendonk, Catharina C. M., and Loonen, Jacqueline J.

Subjects
MEDICAL care use, CHILDHOOD cancer, REPRODUCTIVE technology, REPRODUCTIVE health, CANCER survivors, REPRODUCTIVE health services, FERTILITY clinics, FERTILITY preservation
Abstract

Background: Treatment‐related gonadal dysfunction leading to fertility problems is a frequently encountered late effect in childhood cancer survivors (CCSs). This study evaluated reproductive outcomes and reproductive health care utilization among male CCSs compared with male siblings. Methods: A nationwide cohort study was conducted as part of the Dutch Childhood Cancer Survivor LATER study part 1, a questionnaire and linkage study. A questionnaire addressing reproductive outcomes and reproductive health care was completed by 1317 male CCSs and 407 male siblings. A total of 491 CCSs and 185 siblings had a previous or current desire for children and were included in this study. Results: Fewer CCSs had biological children compared with siblings (65% vs. 88%; p <.001). The type of conception by men who fathered a child was comparable between CCSs and siblings (spontaneous conception of 90% of both groups; p =.86). The percentage of men who had consulted a reproductive specialist because of not siring a pregnancy was higher in CCSs compared with siblings (34% vs. 12%; p <.001). Following consultation, fewer CCSs underwent assisted reproductive techniques (ART) compared with siblings (41% vs. 77%; p =.001). After ART, fewer CCSs fathered a child compared with siblings (49% vs. 94%; p =.001). Conclusions: More male survivors consult a reproductive specialist, but fewer survivors undergo ART and father a child after ART compared with siblings. This insight is important for understanding potential problems faced by survivors regarding family planning and emphasizes the importance of collaboration between oncologists and reproductive specialists. This study showed that two‐thirds of male survivors of childhood cancer who had a desire for children fathered a biological child and that children of 90% of male survivors were conceived spontaneously. Compared with male siblings, more male survivors consulted a reproductive specialist because of not siring a pregnancy; however, both the application of and birth rates after assisted reproductive techniques in survivors were lower. [ABSTRACT FROM AUTHOR]

Published
2024
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36. The Value of IgM Memory B-Cells in the Assessment of Splenic Function in Childhood Cancer Survivors at Risk for Splenic Dysfunction: A DCCSS-LATER Study

Author

Houtman, Bente M., primary, Walraven, Iris, additional, de Grouw, Elke, additional, van der Maazen, Richard W. M., additional, Kremer, Leontien C. M., additional, van Dulmen-den Broeder, Eline, additional, van den Heuvel-Eibrink, Marry M., additional, Tissing, Wim J. E., additional, Bresters, Dorine, additional, van der Pal, Helena J. H., additional, de Vries, Andrica C. H., additional, Louwerens, Marloes, additional, van der Heiden-van der Loo, Margriet, additional, Neggers, Sebastian J. C., additional, Janssens, Geert O., additional, Blijlevens, Nicole M. A., additional, Lambeck, Annechien J. A., additional, Preijers, Frank, additional, and Loonen, Jacqueline J., additional

Published
2023
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38. Psychosexual development, sexual functioning and sexual satisfaction in long‐term childhood cancer survivors: DCCSS‐LATER 2 sexuality substudy

Author

Priboi, Cristina, primary, van Gorp, Marloes, additional, Maurice‐Stam, Heleen, additional, Michel, Gisela, additional, Kremer, Leontien C. M., additional, Tissing, Wim J. E., additional, Loonen, Jacqueline J., additional, van der Pal, Helena J. H., additional, de Vries, Andrica C. H., additional, van den Heuvel‐Eibrink, Marry M., additional, Ronckers, Cécile M., additional, Bresters, Dorine, additional, Louwerens, Marloes, additional, Neggers, Sebastian J. C. C. M., additional, van der Heiden‐van der Loo, Margriet, additional, van Dulmen‐den Broeder, Eline, additional, and Grootenhuis, Martha, additional

Published
2023
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39. Psychosexual development, sexual functioning and sexual satisfaction in long-term childhood cancer survivors: DCCSS-LATER 2 sexuality substudy

Author

Priboi, Cristina, van Gorp, Marloes, Maurice-Stam, Heleen, Michel, Gisela, Kremer, Leontien C. M., Tissing, Wim J. E., Loonen, Jacqueline J., van der Pal, Helena J. H., de Vries, Andrica C. H., van den Heuvel-Eibrink, Marry M., Ronckers, Cécile M., Bresters, Dorine, Louwerens, Marloes, Neggers, Sebastian J. C. C. M., van der Heiden-van der Loo, Margriet, van Dulmen-den Broeder, Eline, and Grootenhuis, Martha

Abstract

Objectives Childhood cancer may negatively impact childhood cancer survivors' (CCS) sexuality. However, this is an understudied research area. We aimed to describe the psychosexual development, sexual functioning and sexual satisfaction of CCS, and identify determinants for these outcomes. Secondarily, we compared the outcomes of a subsample of emerging adult CCS to the Dutch general population. Methods From the Dutch Childhood Cancer Survivor Study LATER cohort (diagnosed 1963?2001), 1912 CCS (18?71 years, 50.8% male) completed questions on sexuality, psychosocial development, body perception, mental and physical health. Multivariable linear regressions were used to identify determinants. Sexuality of CCS age 18?24 (N = 243) was compared to same-aged references using binomial tests and t-tests. Results One third of all CCS reported hindered sexuality due to childhood cancer, with insecure body the most often reported reason (44.8%). Older age at study, lower education, surviving central nervous system cancer, poorer mental health and negative body perception were identified as determinants for later sexual debut, worse sexual functioning and/or sexual satisfaction. CCS age 18?24 showed significantly less experience with kissing (p = 0.014), petting under clothes (p = 0.002), oral (p = 0.016) and anal sex (p = 0.032) when compared to references. No significant differences with references were found for sexual functioning and sexual satisfaction, neither among female CCS nor male CCS age 18?24. Conclusions Emerging adult CCS reported less experience with psychosexual development, but similar sexual functioning and sexual satisfaction compared to references. We identified determinants for sexuality, which could be integrated in clinical interventions for CCS at risk for reduced sexuality., + ID der Publikation: unilu_68954 + Sprache: Englisch + Letzte Aktualisierung: 2023-07-21 15:28:04

Published
2023
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40. Cardiac Disease in Childhood Cancer Survivors Treated With Radiation Therapy: A PENTEC Comprehensive Review

Author

Bates, James E., primary, Rancati, Tiziana, additional, Keshavarz, Homa, additional, Gagliardi, Giovanna, additional, Aznar, Marianne C., additional, Howell, Rebecca M., additional, Shrestha, Suman, additional, Moiseenko, Vitali, additional, Yorke, Ellen, additional, Armenian, Saro, additional, Kremer, Leontien, additional, Chen, Ming Hui, additional, van der Pal, Helena J., additional, Cutter, David J., additional, Constine, Louis S., additional, and Hodgson, David, additional

Published
2023
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41. 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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42. 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

43. 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

44. 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

45. The Value of IgM Memory B-Cells in the Assessment of Splenic Function in Childhood Cancer Survivors at Risk for Splenic Dysfunction: A DCCSS-LATER Study

Author

Zorg en O&O, Cancer, Child Health, Speerpunt, PMC Medisch specialisten, SCT patientenzorg, MS Radiotherapie, Houtman, Bente M, Walraven, Iris, de Grouw, Elke, van der Maazen, Richard W M, Kremer, Leontien C M, van Dulmen-den Broeder, Eline, van den Heuvel-Eibrink, Marry M, Tissing, Wim J E, Bresters, Dorine, van der Pal, Helena J H, de Vries, Andrica C H, Louwerens, Marloes, van der Heiden-van der Loo, Margriet, Neggers, Sebastian J C, Janssens, Geert O, Blijlevens, Nicole M A, Lambeck, Annechien J A, Preijers, Frank, Loonen, Jacqueline J, Zorg en O&O, Cancer, Child Health, Speerpunt, PMC Medisch specialisten, SCT patientenzorg, MS Radiotherapie, Houtman, Bente M, Walraven, Iris, de Grouw, Elke, van der Maazen, Richard W M, Kremer, Leontien C M, van Dulmen-den Broeder, Eline, van den Heuvel-Eibrink, Marry M, Tissing, Wim J E, Bresters, Dorine, van der Pal, Helena J H, de Vries, Andrica C H, Louwerens, Marloes, van der Heiden-van der Loo, Margriet, Neggers, Sebastian J C, Janssens, Geert O, Blijlevens, Nicole M A, Lambeck, Annechien J A, Preijers, Frank, and Loonen, Jacqueline J

Published
2023

46. 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

47. Psychosocial functioning of adult siblings of Dutch very long‐term survivors of childhood cancer: DCCSS‐LATER 2 psycho‐oncology study.

Author

Joosten, Mala M. H., van Gorp, Marloes, van Dijk, Jennifer, Kremer, Leontien C. M., van Dulmen‐den Broeder, Eline, Tissing, Wim J. E., Loonen, Jacqueline J., van der Pal, Helena J. H., de Vries, Andrica C. H., van den Heuvel‐Eibrink, Marry M., Ronckers, Cécile, Bresters, Dorine, Louwerens, Marloes, Neggers, Sebastian J. C. C. M., van der Heiden‐van der Loo, Margriet, Maurice‐Stam, Heleen, Grootenhuis, Martha A., Versluys, Birgitta, van Leeuwen, Flora, and van der Steeg, Lideke

Subjects
PSYCHO-oncology, PSYCHOSOCIAL functioning, CHILDHOOD cancer, DUTCH people, POST-traumatic stress, CANCER survivors
Abstract

Objective: To describe psychosocial outcomes among adult siblings of very long‐term childhood cancer survivors (CCS), to compare these outcomes to reference populations and to identify factors associated with siblings' psychosocial outcomes. Methods: Siblings of survivors (diagnosed <18 years old, between 1963 and 2001, >5 years since diagnosis) of the Dutch Childhood Cancer Survivor Study DCCSS‐LATER cohort were invited to complete questionnaires on HRQoL (TNO‐AZL Questionnaire for Adult's HRQoL), anxiety/depression (Hospital Anxiety and Depression Scale), post‐traumatic stress (Self‐Rating Scale for Post‐traumatic Stress Disorder), self‐esteem (Rosenberg Self‐Esteem Scale) and benefit and burden (Benefit and Burden Scale for Children). Outcomes were compared to a reference group if available, using Mann‐Whitney U and chi‐Square tests. Associations of siblings' sociodemographic and CCS' cancer‐related characteristics with the outcomes were assessed with mixed model analysis. Results: Five hundred five siblings (response rate 34%, 64% female, mean age 37.5, mean time since diagnosis 29.5) of 412 CCS participated. Siblings had comparable HRQoL, anxiety and self‐esteem to references with no or small differences (r = 0.08−0.15, p < 0.05) and less depression. Proportions of symptomatic PTSD were very small (0.4%−0.6%). Effect sizes of associations of siblings' sociodemographic and CCS cancer‐related characteristics were mostly small to medium (β = 0.19−0.67, p < 0.05) and no clear trend was found in the studied associated factors for worse outcomes. Conclusions: On the very long‐term, siblings do not have impaired psychosocial functioning compared to references. Cancer‐related factors seem not to impact siblings' psychosocial functioning. Early support and education remain essential to prevent long‐term consequences. [ABSTRACT FROM AUTHOR]

Published
2023
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48. 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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49. 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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