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2. A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment

Author

van Teunenbroek, Kim C., Mulder, Renée L., Ahout, Inge M. L., Bindels-de Heus, Karen G. C. B., Delsman-van Gelder, Catharina M., Galimont-Collen, Annemie F. S., de Groot, Marinka A. R., Heitink-Polle, Katja M. J., Looijestijn, Jeffry, Mensink, Maarten O., Mulder, Selma, Schieving, Jolanda H., Schouten-van Meeteren, Antoinette Y. N., Verheijden, Johannes M. A., Rippen, Hester, Borggreve, Brigitt C. M., Kremer, Leontien C. M., Verhagen, A. A. Eduard, and Michiels, Erna M. C.

Published
2024
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3. 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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4. From long-term follow-up Recommendations for clinical practice to plain language summaries for childhood, adolescent, and young adult cancer survivors

Author

van den Oever, Selina R., Fuchs, Tessa, Levitt, Gill A., Haupt, Riccardo, Mulder, Renée L., Amariutei, Ana, Bardi, Edit, Becker, Tom, Brown, Morven, Gsell, Hannah, Hartogh, Jaap den, Essiaf, Samira, Muraca, Monica, Potter, Emma, Schneider, Carina, Sugden, Elaine, Tomášiková, Zuzana, Vermeulen, Herma, Kremer, Leontien C.M., Skinner, Roderick, and van der Pal, Helena J.H.

Published
2024
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6. 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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7. Recommendations for surveillance of pulmonary dysfunction among childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

Otth, Maria, Kasteler, Rahel, Mulder, Renée L., Agrusa, Jennifer, Armenian, Saro H., Barnea, Dana, Bergeron, Anne, Bhatt, Neel S., Bourke, Stephen J., Constine, Louis S., Goutaki, Myrofora, Green, Daniel M., Hennewig, Ulrike, Houdouin, Veronique, Hudson, Melissa M., Kremer, Leontien, Latzin, Philipp, Ng, Antony, Oeffinger, Kevin C., Schindera, Christina, Skinner, Roderick, Sommer, Grit, Srinivasan, Saumini, Stokes, Dennis C., Versluys, Birgitta, Waespe, Nicolas, Weiner, Daniel J., Dietz, Andrew C., and Kuehni, Claudia E.

Published
2024
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8. 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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9. 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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10. Recommendations for the surveillance of mental health problems in childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

Marchak, Jordan Gilleland, Christen, Salome, Mulder, Renée L, Baust, Katja, Blom, Johanna M C, Brinkman, Tara M, Elens, Iris, Harju, Erika, Kadan-Lottick, Nina S, Khor, Joel W T, Lemiere, Jurgen, Recklitis, Christopher J, Wakefield, Claire E, Wiener, Lori, Constine, Louis S, Hudson, Melissa M, Kremer, Leontien C M, Skinner, Roderick, Vetsch, Janine, Lee, Jennifer L, and Michel, Gisela

Published
2022
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11. A Dutch paediatric palliative care guideline:a systematic review and evidence-based recommendations for symptom treatment

Author

van Teunenbroek, Kim C., Mulder, Renée L., Ahout, Inge M.L., Bindels-de Heus, Karen G.C.B., Delsman-van Gelder, Catharina M., Galimont-Collen, Annemie F.S., de Groot, Marinka A.R., Heitink-Polle, Katja M.J., Looijestijn, Jeffry, Mensink, Maarten O., Mulder, Selma, Schieving, Jolanda H., Schouten-van Meeteren, Antoinette Y.N., Verheijden, Johannes M.A., Rippen, Hester, Borggreve, Brigitt C.M., Kremer, Leontien C.M., Verhagen, A. A.Eduard, Michiels, Erna M.C., van Teunenbroek, Kim C., Mulder, Renée L., Ahout, Inge M.L., Bindels-de Heus, Karen G.C.B., Delsman-van Gelder, Catharina M., Galimont-Collen, Annemie F.S., de Groot, Marinka A.R., Heitink-Polle, Katja M.J., Looijestijn, Jeffry, Mensink, Maarten O., Mulder, Selma, Schieving, Jolanda H., Schouten-van Meeteren, Antoinette Y.N., Verheijden, Johannes M.A., Rippen, Hester, Borggreve, Brigitt C.M., Kremer, Leontien C.M., Verhagen, A. A.Eduard, and Michiels, Erna M.C.

Abstract

Background: Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care. Methods: A multidisciplinary panel of 56 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on symptom treatment in paediatric palliative care including anxiety and depression, delirium, dyspnoea, haematological symptoms, coughing, skin complaints, nausea and vomiting, neurological symptoms, pain, death rattle, fatigue, paediatric palliative sedation and forgoing hydration and nutrition. Recommendations were based on evidence from a systematic literature search, additional literature sources (such as guidelines), clinical expertise, and patient and family values. We used the GRADE methodology for appraisal of evidence. Parents were included in the guideline panel to ensure the representation of patient and family values. Results: We included a total of 18 studies that reported on the effects of specific (non) pharmacological interventions to treat symptoms in paediatric palliative care. A few of these interventions showed significant improvement in symptom relief. This evidence could only (partly) answer eight out of 27 clinical questions. We included 29 guidelines and two textbooks as additional literature to deal with lack of evidence. In total, we formulated 221 recommendations on symptom treatment in paediatric palliative care based on evidence, additional literature, clinical expertise, and patient and family values. Conclusion: Even though available evidence on symptom-related paediatric palliative care interven

Published
2024

12. 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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13. Bone mineral density surveillance for childhood, adolescent, and young adult cancer survivors: evidence-based recommendations from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

van Atteveld, Jenneke E, Mulder, Renée L, van den Heuvel-Eibrink, Marry M, Hudson, Melissa M, Kremer, Leontien C M, Skinner, Roderick, Wallace, W Hamish, Constine, Louis S, Higham, Claire E, Kaste, Sue C, Niinimäki, Riitta, Mostoufi-Moab, Sogol, Alos, Nathalie, Fintini, Danilo, Templeton, Kimberly J, Ward, Leanne M, Frey, Eva, Franceschi, Roberto, Pavasovic, Vesna, Karol, Seth E, Amin, Nadia L, Vrooman, Lynda M, Harila-Saari, Arja, Demoor-Goldschmidt, Charlotte, Murray, Robert D, Bardi, Edit, Lequin, Maarten H, Faienza, Maria Felicia, Zaikova, Olga, Berger, Claire, Mora, Stefano, Ness, Kirsten K, Neggers, Sebastian J C M M, Pluijm, Saskia M F, Simmons, Jill H, and Di Iorgi, Natascia

Published
2021
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14. 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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15. Communication and ethical considerations for fertility preservation for 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

Anderson, Richard A, Barnbrock, Anke, Beck, Joern D, Bos, Annelies M E, Calaminus, Gabriele, Constine, Louis S, Demeestere, Isabelle, Denzer, Christian, Grabow, Desiree, di Iorgi, Natascia, Hoefgen, Holly R, Jahnukainen, Kirsi, Kaatsch, Peter, Kebudi, Rejin, Lambalk, Cornelis, Langer, Thorsten, Loonen, Jacqueline, Lorenzo, Armando, Meacham, Lillian R, Meissner, Andreas, Mitchell, Rod T, Nahata, Leena, Ranft, Andreas, Dinkelman-Smit, Marij, Stern, Catharyn, Stutz-Grunder, Eveline, Tournaye, Herman, van Dorp, Wendy, van Pelt, Ans M M, de Vries, Andrica, Yu, Richard, Mulder, Renée L, Font-Gonzalez, Anna, van Dulmen-den Broeder, Eline, Quinn, Gwendolyn P, Ginsberg, Jill P, Loeffen, Erik A H, Hudson, Melissa M, Burns, Karen C, van Santen, Hanneke M, Berger, Claire, Diesch, Tamara, Dirksen, Uta, Giwercman, Aleksander, Gracia, Clarisa, Hunter, Sarah E, Kelvin, Joanne F, Klosky, James L, Laven, Joop S E, Lockart, Barbara A, Neggers, Sebastian J C M M, Peate, Michelle, Phillips, Bob, Reed, Damon R, Tinner, Eva Maria E, Byrne, Julianne, Veening, Margreet, van de Berg, Marleen, Verhaak, Chris M, Anazodo, Antoinette, Rodriguez-Wallberg, Kenny, van den Heuvel-Eibrink, Marry M, Asogwa, Ogechukwu A, Brownsdon, Alexandra, Wallace, W Hamish, Green, Daniel M, Skinner, Roderick, Haupt, Riccardo, Kenney, Lisa B, Levine, Jennifer, van de Wetering, Marianne D, Tissing, Wim J E, Paul, Norbert W, Kremer, Leontien C M, and Inthorn, Julia

Published
2021
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16. Fertility preservation for female 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, Dirksen, Uta, Ginsberg, Jill, 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, Reed, Damon R, Tinner, Eva Maria E, van den Berg, Marleen, Verhaak, Chris, Mulder, Renée L, Font-Gonzalez, Anna, Hudson, Melissa M, van Santen, Hanneke M, Loeffen, Erik A H, Burns, Karen C, Quinn, Gwendolyn P, van Dulmen-den Broeder, Eline, Byrne, Julianne, Haupt, Riccardo, Wallace, W Hamish, van den Heuvel-Eibrink, Marry M, Anazodo, Antoinette, Anderson, Richard A, Barnbrock, Anke, Beck, Joern D, Bos, Annelies M E, Demeestere, Isabelle, Denzer, Christian, Di Iorgi, Natascia, Hoefgen, Holly R, Kebudi, Rejin, Lambalk, Cornelis, Langer, Thorsten, Meacham, Lillian R, Rodriguez-Wallberg, Kenny, Stern, Catharyn, Stutz-Grunder, Eveline, van Dorp, Wendy, Veening, Margreet, Veldkamp, Saskia, van der Meulen, Eline, Constine, Louis S, Kenney, Lisa B, van de Wetering, Marianne D, Kremer, Leontien C M, Levine, Jennifer, and Tissing, Wim J E

Published
2021
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17. 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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18. Barriers, facilitators, and other factors associated with health behaviors in childhood, adolescent, and young adult cancer survivors: A systematic review.

Author

de Beijer, Ismay A. E., Bouwman, Eline, Mulder, Renée L., Steensma, Philippa, Brown, Morven C., Araújo‐Soares, Vera, Balcerek, Magdalena, Bardi, Edit, Falck Winther, Jeanette, Frederiksen, Line Elmerdahl, van Gorp, Marloes, Oberti, Sara, van Kalsbeek, Rebecca J., Kepak, Tomas, Kepakova, Katerina, Gsell, Hannah, Kienesberger, Anita, van Litsenburg, Raphaële, Mader, Luzius, and Michel, Gisela

Subjects
HEALTH behavior, YOUNG adults, CANCER survivors, CANCER patients, AT-risk behavior
Abstract

Background: Healthy behaviors are paramount in preventing long‐term adverse health outcomes in childhood, adolescent, and young adult (CAYA) cancer survivors. We systematically reviewed and synthesized existing literature on barriers, facilitators, and other factors associated with health behaviors in this population. Methods: MEDLINE and PsycInfo were searched for qualitative and quantitative studies including survivors aged 16–50 years at study, a cancer diagnosis ≤25 years and ≥2 years post diagnosis. Health behaviors included physical activity, smoking, diet, alcohol consumption, sun exposure, and a combination of these behaviors (defined as health behaviors in general). Results: Barriers, facilitators, and other factors reported in ≥2 two studies were considered relevant. Out of 4529 studies, 27 were included (n = 31,905 participants). Physical activity was the most frequently examined behavior (n = 12 studies), followed by smoking (n = 7), diet (n = 7), alcohol (n = 4), sun exposure (n = 4), and health behavior in general (n = 4). Relevant barriers to physical activity were fatigue, lack of motivation, time constraints, and current smoking. Relevant facilitators were perceived health benefits and motivation. Influence of the social environment and poor mental health were associated with more smoking, while increased energy was associated with less smoking. No relevant barriers and facilitators were identified for diet, alcohol consumption, and sun exposure. Barriers to healthy behavior in general were unmet information needs and time constraints whereas lifestyle advice, information, and discussions with a healthcare professional facilitated healthy behavior in general. Concerning other factors, women were more likely to be physically inactive, but less likely to drink alcohol and more likely to comply with sun protection recommendations than men. Higher education was associated with more physical activity, and lower education with more smoking. Conclusion: This knowledge can be used as a starting point to develop health behavior interventions, inform lifestyle coaches, and increase awareness among healthcare providers regarding which survivors are most at risk of unhealthy behaviors. [ABSTRACT FROM AUTHOR]

Published
2024
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23. Recommendations for surveillance of pulmonary dysfunction among childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

Otth, Maria, primary, Kasteler, Rahel, additional, Mulder, Renée L, additional, Agrusa, Jennifer, additional, Armenian, Saro H, additional, Barnea, Dana, additional, Bergeron, Anne, additional, Bhatt, Neel S, additional, Bourke, Stephen J, additional, Constine, Louis S, additional, Goutaki, Myrofora, additional, Green, Daniel M, additional, Hennewig, Ulrike, additional, Houdouin, Veronique, additional, Hudson, Melissa M, additional, Kremer, Leontien, additional, Latzin, Philipp, additional, Ng, Antony, additional, Oeffinger, Kevin C, additional, Schindera, Christina, additional, Skinner, Roderick, additional, Sommer, Grit, additional, Srinivasan, Saumini, additional, Stokes, Dennis C, additional, Versluys, Birgitta, additional, Waespe, Nicolas, additional, Weiner, Daniel J, additional, Dietz, Andrew C, additional, and Kuehni, Claudia E, additional

Published
2023
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25. Recommendations for gonadotoxicity surveillance in male childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group in collaboration with the PanCareSurFup Consortium

Author

Skinner, Roderick, Mulder, Renee L, Kremer, Leontien C, Hudson, Melissa M, Constine, Louis S, Bardi, Edit, Boekhout, Annelies, Borgmann-Staudt, Anja, Brown, Morven C, Cohn, Richard, Dirksen, Uta, Giwercman, Alexsander, Ishiguro, Hiroyuki, Jahnukainen, Kirsi, Kenney, Lisa B, Loonen, Jacqueline J, Meacham, Lilian, Neggers, Sebastian, Nussey, Stephen, Petersen, Cecilia, Shnorhavorian, Margarett, van den Heuvel-Eibrink, Marry M, van Santen, Hanneke M, Wallace, William H B, and Green, Daniel M

Published
2017
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27. Recommendations for the surveillance of education and employment outcomes in survivors of childhood, adolescent, and young adult cancer

Author

Devine, Katie A, Christen, Salome, Mulder, Renée L, Brown, Morven C, Ingerski, Lisa M, Mader, Luzius, Potter, Emma J, Sleurs, Charlotte, Viola, Adrienne S, Waern, Susanna, Constine, Louis S, Hudson, Melissa M, Kremer, Leontien C M, Skinner, Roderick, Michel, Gisela, Gilleland Marchak, Jordan, and Schulte, Fiona S M

Subjects
Adult, Cancer Research, GREAT-BRITAIN, 610 Medicine & health, OCCUPATIONAL OUTCOMES, NEUROCOGNITIVE OUTCOMES, Central Nervous System Neoplasms, Young Adult, QUALITY-OF-LIFE, 360 Social problems & social services, Neoplasms, Humans, late effects, Survivors, Child, ACUTE LYMPHOBLASTIC-LEUKEMIA, childhood, education, Science & Technology, LONG-TERM SURVIVORS, and young adult cancer, STEM-CELL TRANSPLANTATION, evidence-based guidelines, NEUROPSYCHOLOGICAL PERFORMANCE, Oncology, adolescent, Practice Guidelines as Topic, employment, SCHOOL PERFORMANCE, Disease Progression, Quality of Life, Educational Status, FOLLOW-UP, Life Sciences & Biomedicine, Neoplasms/epidemiology, survivorship
Abstract

Educational achievement and employment outcomes are critical indicators of quality of life in survivors of childhood, adolescent, and young adult (CAYA) cancer. This review is aimed at providing an evidence-based clinical practice guideline (CPG) with internationally harmonized recommendations for the surveillance of education and employment outcomes in survivors of CAYA cancer diagnosed before the age of 30 years. The CPG was developed by a multidisciplinary panel under the umbrella of the International Late Effects of Childhood Cancer Guideline Harmonization Group. After evaluating concordances and discordances of 4 existing CPGs, the authors performed a systematic literature search through February 2021. They screened articles for eligibility, assessed quality, and extracted and summarized the data from included articles. The authors formulated recommendations based on the evidence and clinical judgment. There were 3930 articles identified, and 83 of them, originating from 17 countries, were included. On a group level, survivors were more likely to have lower educational achievement and more likely to be unemployed than comparisons. Key risk factors for poor outcomes included receiving a primary diagnosis of a central nervous system tumor and experiencing late effects. The authors recommend that health care providers be aware of the risk of educational and employment problems, implement regular surveillance, and refer survivors to specialists if problems are identified. In conclusion, this review presents a harmonized CPG that aims to facilitate evidence-based care, positively influence education and employment outcomes, and ultimately minimize the burden of disease and treatment-related late adverse effects for survivors of CAYA cancers. LAY SUMMARY: A multidisciplinary panel has developed guidelines for the surveillance of education and employment outcomes among survivors of childhood, adolescent, and young adult cancer. On the basis of evidence showing that survivors are at risk for lower educational achievement and unemployment, it is recommended that all survivors receive regular screening for educational and employment outcomes. ispartof: CANCER vol:128 issue:13 pages:2405-2419 ispartof: location:United States status: published

Published
2022

35. Systematic review and updated recommendations for cardiomyopathy surveillance for survivors of childhood, adolescent, and young adult cancer from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

Ehrhardt, Matthew J, primary, Leerink, Jan M, additional, Mulder, Renée L, additional, Mavinkurve-Groothuis, Annelies, additional, Kok, Wouter, additional, Nohria, Anju, additional, Nathan, Paul C, additional, Merkx, Remy, additional, de Baat, Esmée, additional, Asogwa, Ogechukwu A, additional, Skinner, Roderick, additional, Wallace, Hamish, additional, Lieke Feijen, E A M, additional, de Ville de Goyet, Maëlle, additional, Prasad, Maya, additional, Bárdi, Edit, additional, Pavasovic, Vesna, additional, van der Pal, Helena, additional, Fresneau, Brice, additional, Demoor-Goldschmidt, Charlotte, additional, Hennewig, Ulrike, additional, Steinberger, Julia, additional, Plummer, Chris, additional, Chen, Ming Hui, additional, Teske, Arco J, additional, Haddy, Nadia, additional, van Dalen, Elvira C, additional, Constine, Louis S, additional, Chow, Eric J, additional, Levitt, Gill, additional, Hudson, Melissa M, additional, Kremer, Leontien C M, additional, and Armenian, Saro H, additional

Published
2023
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36. Recommendations for cardiomyopathy surveillance for survivors of childhood cancer: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

Armenian, Saro H, Hudson, Melissa M, Mulder, Renee L, Chen, Ming Hui, Constine, Louis S, Dwyer, Mary, Nathan, Paul C, Tissing, Wim J E, Shankar, Sadhna, Sieswerda, Elske, Skinner, Rod, Steinberger, Julia, van Dalen, Elvira C, van der Pal, Helena, Wallace, W Hamish, Levitt, Gill, and Kremer, Leontien C M

Published
2015
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37. Primary cardioprotection with dexrazoxane in patients with childhood cancer who are expected to receive anthracyclines: recommendations from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

de Baat, Esmée C, primary, van Dalen, Elvira C, additional, Mulder, Renée L, additional, Hudson, Melissa M, additional, Ehrhardt, Matthew J, additional, Engels, Frederike K, additional, Feijen, Elizabeth A M, additional, Grotenhuis, Heynric B, additional, Leerink, Jan M, additional, Kapusta, Livia, additional, Kaspers, Gertjan J L, additional, Merkx, Remy, additional, Mertens, Luc, additional, Skinner, Roderick, additional, Tissing, Wim J E, additional, de Vathaire, Florent, additional, Nathan, Paul C, additional, Kremer, Leontien C M, additional, Mavinkurve-Groothuis, Annelies M C, additional, and Armenian, Saro, additional

Published
2022
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38. Evaluating the feasibility, effectiveness and costs of implementing person-centred follow-up care for childhood cancer survivors in four European countries: the PanCareFollowUp Care prospective cohort study protocol

Author

van Kalsbeek, Rebecca J, primary, Korevaar, Joke C, additional, Rijken, Mieke, additional, Haupt, Riccardo, additional, Muraca, Monica, additional, Kepák, Tomáš, additional, Kepakova, Katerina, additional, Blondeel, Anne, additional, Boes, Stefan, additional, Frederiksen, Line E, additional, Essiaf, Samira, additional, Winther, Jeanette F, additional, Hermens, Rosella P M G, additional, Kienesberger, Anita, additional, Loonen, Jacqueline J, additional, Michel, Gisela, additional, Mulder, Renée L, additional, O'Brien, Kylie B, additional, van der Pal, Helena J H, additional, Pluijm, Saskia M F, additional, Roser, Katharina, additional, Skinner, Roderick, additional, Renard, Marleen, additional, Uyttebroeck, Anne, additional, Follin, Cecilia, additional, Hjorth, Lars, additional, and Kremer, Leontien C M, additional

Published
2022
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40. 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

41. Recommendations for breast cancer surveillance for female survivors of childhood, adolescent, and young adult cancer given chest radiation: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

Mulder, Renée L, Kremer, Leontien C M, Hudson, Melissa M, Bhatia, Smita, Landier, Wendy, Levitt, Gill, Constine, Louis S, Wallace, W Hamish, van Leeuwen, Flora E, Ronckers, Cécile M, Henderson, Tara O, Dwyer, Mary, Skinner, Roderick, and Oeffinger, Kevin C

Published
2013
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42. Recommendations for the surveillance of education and employment outcomes in survivors of childhood, adolescent, and young adult cancer: A report from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

Christen, Salome, Mulder, Renée L., Brown, Morven C., Ingerski, Lisa M., Mader, Luzius Adrian, Potter, Emma J., Sleurs, Charlotte, Viola, Adrienne S., Waern, Susanna, Constine, Louis S., Hudson, Melissa M., Kremer, Leontien C. M., Skinner, Roderick, Michel, Gisela, Gilleland Marchak, Jordan, and Schulte, Fiona S. M.

Subjects
Late effects, employment, childhood, adolescent, and young adult cancer, Survivorship, evidence-based guidelines
Abstract

Educational achievement and employment outcomes are critical indicators of quality of life in survivors of childhood, adolescent, and young adult (CAYA) cancer. This review is aimed at providing an evidence-based clinical practice guideline (CPG) with internationally harmonized recommendations for the surveillance of education and employment outcomes in survivors of CAYA cancer diagnosed before the age of 30 years. The CPG was developed by a multidisciplinary panel under the umbrella of the International Late Effects of Childhood Cancer Guideline Harmonization Group. After evaluating concordances and discordances of 4 existing CPGs, the authors performed a systematic literature search through February 2021. They screened articles for eligibility, assessed quality, and extracted and summarized the data from included articles. The authors formulated recommendations based on the evidence and clinical judgment. There were 3930 articles identified, and 83 of them, originating from 17 countries, were included. On a group level, survivors were more likely to have lower educational achievement and more likely to be unemployed than comparisons. Key risk factors for poor outcomes included receiving a primary diagnosis of a central nervous system tumor and experiencing late effects. The authors recommend that health care providers be aware of the risk of educational and employment problems, implement regular surveillance, and refer survivors to specialists if problems are identified. In conclusion, this review presents a harmonized CPG that aims to facilitate evidence-based care, positively influence education and employment outcomes, and ultimately minimize the burden of disease and treatment-related late adverse effects for survivors of CAYA cancers. Lay Summary A multidisciplinary panel has developed guidelines for the surveillance of education and employment outcomes among survivors of childhood, adolescent, and young adult cancer. On the basis of evidence showing that survivors are at risk for lower educational achievement and unemployment, it is recommended that all survivors receive regular screening for educational and employment outcomes., + ID der Publikation: unilu_58956 + Sprache: Englisch + Letzte Aktualisierung: 2022-05-04 16:54:38

Published
2022
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43. Recommendations for the surveillance of mental health problems in childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

Gilleland Marchak, Jordan, Christen, Salome, Mulder, Renée L., Baust, Katja, Blom, Johanna M. C., Brinakman, Tara M., Elens, Iris, Harju, Erika, Kadan-Lottick, Nina S., Khor, Joel W. T., Lemiere, Jurgen, Recklitis, Christopher J., Wakefield, Claire E., Kremer, Leontien C. M., Skinner, Roderick, Vetsch, Janine, Lee, Jennifer L., Michel, Gisela, Gilleland Marchak, Jordan, Christen, Salome, Mulder, Renée L., Baust, Katja, Blom, Johanna M. C., Brinakman, Tara M., Elens, Iris, Harju, Erika, Kadan-Lottick, Nina S., Khor, Joel W. T., Lemiere, Jurgen, Recklitis, Christopher J., Wakefield, Claire E., Kremer, Leontien C. M., Skinner, Roderick, Vetsch, Janine, Lee, Jennifer L., and Michel, Gisela

Abstract

Survivors of childhood, adolescent, and young adult (diagnosed when <25 years of age) cancer are at risk of mental health problems. The aim of this clinical practice guideline is to harmonise international recommendations for mental health surveillance in survivors of childhood, adolescent, and young adult cancer. This guideline was developed by a multidisciplinary panel of experts under the sponsorship of the International Guideline Harmonization Group. We evaluated concordance among existing survivorship clinical practice guidelines and conducted a systematic review following evidence-based methods. Of 7249 studies identified, 76 articles from 12 countries met the inclusion criteria. Recommendations were formulated on the basis of identified evidence in combination with clinical considerations. This international clinical practice guideline strongly recommends mental health surveillance for all survivors of childhood, adolescent, and young adult cancers at every follow-up visit and prompt referral to mental health specialists when problems are identified. Overall, the recommendations reflect the necessity of mental health surveillance as part of comprehensive survivor-focused health care., + ID der Publikation: unilu_58818 + Sprache: Englisch + Letzte Aktualisierung: 2022-05-06 10:03:47

Published
2022

44. Evaluating the feasibility, effectiveness and costs of implementing person-centred follow-up care for childhood cancer survivors in four European countries: the PanCareFollowUp Care prospective cohort study protocol

Author

Von Kalsbeek, Rebecca J., Korevaar, Joke C., Rijken, Mieke, Haupt, Riccardo, Muraca, Monica, Kepák, Tomáš, Kepakova, Katerina, Blondeel, Anne, Boes, Stefan, Frederiksen, Line E, Essiaf, Samira, Winther, Jeanette F, Hermens, Rosella P M G, Kienesberger, Anita, Loonen, Jacqueline J, Michel, Gisela, Mulder, Renée L, O'Brien, Kylie B, van der Pal, Helena J H, Pluijm, Saskia M F, Roser, Katharina, Skinner, Roderick, Renard, Marleen, Uyttebroeck, Anne, Follin, Cecilia, Hjorth, Lars, Kremer, Leontien C M, Von Kalsbeek, Rebecca J., Korevaar, Joke C., Rijken, Mieke, Haupt, Riccardo, Muraca, Monica, Kepák, Tomáš, Kepakova, Katerina, Blondeel, Anne, Boes, Stefan, Frederiksen, Line E, Essiaf, Samira, Winther, Jeanette F, Hermens, Rosella P M G, Kienesberger, Anita, Loonen, Jacqueline J, Michel, Gisela, Mulder, Renée L, O'Brien, Kylie B, van der Pal, Helena J H, Pluijm, Saskia M F, Roser, Katharina, Skinner, Roderick, Renard, Marleen, Uyttebroeck, Anne, Follin, Cecilia, Hjorth, Lars, and Kremer, Leontien C M

Abstract

Introduction: Long-term survival after childhood cancer often comes at the expense of late, adverse health conditions. However, survivorship care is frequently not available for adult survivors in Europe. The PanCareFollowUp Consortium therefore developed the PanCareFollowUp Care Intervention, an innovative person-centred survivorship care model based on experiences in the Netherlands. This paper describes the protocol of the prospective cohort study (Care Study) to evaluate the feasibility and the health economic, clinical and patient-reported outcomes of implementing PanCareFollowUp Care as usual care in four European countries.Methods and analysis In this prospective, longitudinal cohort study with at least 6 months of follow-up, 800 childhood cancer survivors will receive the PanCareFollowUp Care Intervention across four study sites in Belgium, Czech Republic, Italy and Sweden, representing different healthcare systems. The PanCareFollowUp Care Intervention will be evaluated according to the Reach, Effectiveness, Adoption, Implementation and Maintenance framework. Clinical and research data are collected through questionnaires, a clinic visit for multiple medical assessments and a follow-up call. The primary outcome is empowerment, assessed with the Health Education Impact Questionnaire. A central data centre will perform quality checks, data cleaning and data validation, and provide support in data analysis. Multilevel models will be used for repeated outcome measures, with subgroup analysis, for example, by study site, attained age, sex or diagnosis.Ethics and dissemination This study will be conducted in accordance with the guidelines of Good Clinical Practice and the Declaration of Helsinki. The study protocol has been reviewed and approved by all relevant ethics committees. The evidence and insights gained by this study will be summarised in a Replication Manual, also including the tools required to implement the PanCareFollowUp Care Interve, + ID der Publikation: unilu_61784 + Sprache: Englisch + Letzte Aktualisierung: 2022-11-30 17:16:31

Published
2022

45. Recommendations for the surveillance of education and employment outcomes in survivors of childhood, adolescent, and young adult cancer: A report from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

International Guidelines Harmonization Group Psychological Late Effects Group, Devine, Katie A, Christen, Salome, Mulder, Renée L, Brown, Morven C, Ingerski, Lisa M, Mader, Luzius, Potter, Emma J, Sleurs, Charlotte, Viola, Adrienne S, Waern, Susanna, Constine, Louis S, Hudson, Melissa M, Kremer, Leontien C M, Skinner, Roderick, Michel, Gisela, Gilleland Marchak, Jordan, Schulte, Fiona S M, International Guidelines Harmonization Group Psychological Late Effects Group, Devine, Katie A, Christen, Salome, Mulder, Renée L, Brown, Morven C, Ingerski, Lisa M, Mader, Luzius, Potter, Emma J, Sleurs, Charlotte, Viola, Adrienne S, Waern, Susanna, Constine, Louis S, Hudson, Melissa M, Kremer, Leontien C M, Skinner, Roderick, Michel, Gisela, Gilleland Marchak, Jordan, and Schulte, Fiona S M

Abstract

Educational achievement and employment outcomes are critical indicators of quality of life in survivors of childhood, adolescent, and young adult (CAYA) cancer. This review is aimed at providing an evidence-based clinical practice guideline (CPG) with internationally harmonized recommendations for the surveillance of education and employment outcomes in survivors of CAYA cancer diagnosed before the age of 30 years. The CPG was developed by a multidisciplinary panel under the umbrella of the International Late Effects of Childhood Cancer Guideline Harmonization Group. After evaluating concordances and discordances of 4 existing CPGs, the authors performed a systematic literature search through February 2021. They screened articles for eligibility, assessed quality, and extracted and summarized the data from included articles. The authors formulated recommendations based on the evidence and clinical judgment. There were 3930 articles identified, and 83 of them, originating from 17 countries, were included. On a group level, survivors were more likely to have lower educational achievement and more likely to be unemployed than comparisons. Key risk factors for poor outcomes included receiving a primary diagnosis of a central nervous system tumor and experiencing late effects. The authors recommend that health care providers be aware of the risk of educational and employment problems, implement regular surveillance, and refer survivors to specialists if problems are identified. In conclusion, this review presents a harmonized CPG that aims to facilitate evidence-based care, positively influence education and employment outcomes, and ultimately minimize the burden of disease and treatment-related late adverse effects for survivors of CAYA cancers. LAY SUMMARY: A multidisciplinary panel has developed guidelines for the surveillance of education and employment outcomes among survivors of childhood, adolescent, and young adult cancer. On the basis of evidence showing that

Published
2022

46. 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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47. Communication and ethical considerations for fertility preservation for 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, Font-Gonzalez, Anna, van Dulmen-den Broeder, Eline, Quinn, Gwendolyn P, Ginsberg, Jill P, Loeffen, Erik A H, Hudson, Melissa M, Burns, Karen C, van Santen, Hanneke M, Berger, Claire, Diesch, Tamara, Dirksen, Uta, Giwercman, Aleksander, Gracia, Clarisa, Hunter, Sarah E, Kelvin, Joanne F, Klosky, James L, Laven, Joop S E, Lockart, Barbara A, Neggers, Sebastian J C M M, Peate, Michelle, Phillips, Bob, Reed, Damon R, Tinner, Eva Maria E, Byrne, Julianne, Veening, Margreet, van de Berg, Marleen, Verhaak, Chris M, Anazodo, Antoinette, Rodriguez-Wallberg, Kenny, et al, Stutz-Grunder, Eveline, University of Zurich, and Mulder, Renée L

Subjects
10036 Medical Clinic, 610 Medicine & health, 2730 Oncology
Published
2021

48. Fertility preservation for female 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, Font-Gonzalez, Anna, Hudson, Melissa M, van Santen, Hanneke M, Loeffen, Erik A H, Burns, Karen C, Quinn, Gwendolyn P, van Dulmen-den Broeder, Eline, Byrne, Julianne, Haupt, Riccardo, Wallace, W Hamish, van den Heuvel-Eibrink, Marry M, Anazodo, Antoinette, Anderson, Richard A, Barnbrock, Anke, Beck, Joern D, Bos, Annelies M E, Demeestere, Isabelle, Denzer, Christian, Di Iorgi, Natascia, Hoefgen, Holly R, Kebudi, Rejin, Lambalk, Cornelis, Langer, Thorsten, Meacham, Lillian R, Rodriguez-Wallberg, Kenny, Stern, Catharyn, Stutz-Grunder, Eveline, van Dorp, Wendy, Veening, Margreet, et al, University of Zurich, and Mulder, Renée L

Subjects
10036 Medical Clinic, 610 Medicine & health, 2730 Oncology
Published
2021

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