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

Author

Calaminus, Gabriele, Baust, Katja, Berger, Claire, Byrne, Julianne, Binder, Harald, Casagranda, Leonie, Grabow, Desiree, Grootenhuis, Martha, Kaatsch, Peter, Kaiser, Melanie, Kepak, Tomas, Kepáková, Kateřina, Kremer, Leontien C M, Kruseova, Jarmila, Luks, Ales, Spix, Claudia, van den Berg, Marleen, van den Heuvel-Eibrink, Marry M M, van Dulmen-den Broeder, Eline, Kuonen, Rahel, Sommer, Grit, and Kuehni, Claudia

Subjects
Medicine, Computer applications to medicine. Medical informatics, R858-859.7
Abstract

BackgroundSurvival after childhood cancer has improved to more than 80% during the last few years, leading to an increased number of childhood cancer survivors. Cancer itself, or its treatment, may cause chronic health conditions, including somatic and mental sequelae, which may affect survivors’ health-related quality of life (HRQoL). ObjectiveThe project PanCareLIFE aims to establish a large database with comprehensive data on childhood cancer survivors from different European countries, including data on HRQoL. Within PanCareLIFE, this study aims to describe HRQoL in survivors, investigate predictors of HRQoL, and describe the association of HRQoL with hearing and female fertility impairment. This paper describes the design of the HRQoL study, the origin of data, strategies for data collection, and sampling characteristics of survivors from each contributing country. MethodsA total of 6 institutions from 5 European countries (the Czech Republic, France, Germany, the Netherlands, and Switzerland) provided data on HRQoL assessed with the Short Form 36 and on relevant predictors. The central PanCareLIFE data center aggregated the data and harmonized the variables between the institutions. Survivors were eligible if they received a diagnosis of cancer according to the 12 main groups of the International Classification of Childhood Cancer, 3rd edition, or Langerhans cell histiocytosis; were aged ≤18 years at the time of diagnosis; were residents of the respective country at the time of diagnosis; had survived ≥5 years after cancer diagnosis; were aged ≥18 years at the time of the questionnaire survey; and did not refuse to registration in the national or local childhood cancer cohort. ResultsWe identified 24,993 eligible survivors. Of those, 19,268 survivors received a questionnaire and 9871 survivors participated, resulting in response rates of 9871/24,993 (39.50%) of eligible survivors and of 9871/19,268 (51.23%) invited survivors. Most participants were diagnosed with cancer between the ages of 10 and 14 years (3448/9871, 34.93%) or

Published
2021
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2. 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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4. 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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5. The Global Retinoblastoma Outcome Study: a prospective, cluster-based analysis of 4064 patients from 149 countries

Author

Fabian, Ido Didi, Abdallah, Elhassan, Abdullahi, Shehu U, Abdulqader, Rula A, Abdulrahaman, Aminatu A, Abouelnaga, Sherif, Ademola-Popoola, Dupe S, Adio, Adedayo, Afifi, Mahmoud A, Afshar, Armin R, Aggarwal, Priyanka, Aghaji, Ada E, Ahmad, Alia, Akib, Marliyanti NR, Akinsete, Adeseye, Al Harby, Lamis, Al Mesfer, Saleh, Al Ani, Mouroge H, Alarcón Portabella, Silvia, Al-Badri, Safaa AF, Alcasabas, Ana Patricia A, Al-Dahmash, Saad A, Alejos, Amanda, Alemany-Rubio, Ernesto, Alfa Bio, Amadou I, Alfonso Carreras, Yvania, Al-Haddad, Christiane E, Al-Hussaini, Hamoud HY, Ali, Amany M, Alia, Donjeta B, Al-Jadiry, Mazin F, Al-Jumaily, Usama, Alkatan, Hind M, All-Eriksson, Charlotta, Al-Mafrachi, Ali ARM, Almeida, Argentino A, Alsawidi, Khalifa M, Al-Shaheen, Athar ASM, Al-Shammary, Entissar H, Amankwaa-Frempong, Doreen, Amiruddin, Primawita O, Armytasari, Inggar, Astbury, Nicholas J, Atalay, Hatice T, Ataseven, Eda, Atchaneeyasakul, La-ongsri, Atsiaya, Rose, Autrata, Rudolf, Balaguer, Julia, Balayeva, Ruhengiz, Barranco, Honorio, Bartoszek, Paulina, Bartuma, Katarina, Bascaran, Covadonga, Bechrakis, Nikolaos E, Beck Popovic, Maja, Begimkulova, Ainura S, Benmiloud, Sarra, Berete, Rokia C, Berry, Jesse L, Bhaduri, Anirban, Bhat, Sunil, Bhattacharyya, Arpita, Biewald, Eva M, Binkley, Elaine, Blum, Sharon, Bobrova, Nadia, Boldt, H.C., Bonanomi, Maria Teresa BC, Bouda, Gabrielle C, Bouguila, Hédi, Brennan, Rachel C, Brichard, Bénédicte G, Buaboonnam, Jassada, Budiongo, Aléine, Burton, Matthew J, Calderón-Sotelo, Patricia, Calle Jara, Doris A, Camuglia, Jayne E, Cano, Miriam R, Capra, Michael, Caspi, Shani, Cassoux, Nathalie, Castela, Guilherme, Castillo, Luis, Català-Mora, Jaume, Cavieres, Isabel, Chandramohan, Arthika, Chantada, Guillermo L, Chaudhry, Shabana, Chawla, Bhavna, Chen, Wensi, Chiwanga, Faraja S, Chuluunbat, Tsengelmaa, Cieslik, Krzysztof, Clark, Antony, Cockcroft, Ruellyn L, Comsa, Codruta, Correa Llano, Maria G, Corson, Timothy W, Couitchere, Line, Cowan-Lyn, Kristin E, Csóka, Monika, Dangboon, Wantanee, Das, Anirban, Das, Pranab, Das, Sima, Davanzo, Jacquelyn M, Davidson, Alan, De Francesco, Sonia, De Potter, Patrick, Quintero D, Karina, Demirci, Hakan, Desjardins, Laurence, Díaz Coronado, Rosdali Y, Dimaras, Helen, Dodgshun, Andrew J, Donato Macedo, Carla R, Dragomir, Monica D, Du, Yi, Du Bruyn, Magritha, Du Plessis, Johannes, Dudeja, Gagan, Eerme, Katrin, Eka Sutyawan, I Wayan, El Kettani, Asmaa, Elbahi, Amal M, Elder, James E, Elhaddad, Alaa M, Elhassan, Moawia MA, Elzembely, Mahmoud M, Ericksen, Connor, Essuman, Vera A, Evina, Ted Grimbert A, Ezegwui, Ifeoma R, Fadoo, Zehra, Fandiño, Adriana C, Faranoush, Mohammad, Fasina, Oluyemi, Fernández, Delia DPG, Fernández-Teijeiro, Ana, Foster, Allen, Frenkel, Shahar, Fu, Ligia D, Fuentes-Alabi, Soad L, Garcia, Juan L, García Aldana, David, Garcia Pacheco, Henry N, Geel, Jennifer A, Ghassemi, Fariba, Girón, Ana V, Goenz, Marco A, Gold, Aaron S, Goldberg, Hila, Gole, Glen A, Gomel, Nir, Gonzalez, Efren, Gonzalez Perez, Graciela, González-Rodríguez, Liudmira, Gorfine, Malka, Graells, Jaime, Gregersen, Pernille A, Grigorovski, Nathalia DAK, Guedenon, Koffi M, Gunasekera, D Sanjeeva, Gündüz, Ahmet K, Gupta, Himika, Gupta, Sanjiv, Gupta, Vineeta, Hadjistilianou, Theodora, Hamel, Patrick, Hamid, Syed A, Hamzah, Norhafizah, Hansen, Eric D, Harbour, J William, Hartnett, M. Elizabeth, Hasanreisoglu, Murat, Muhammad, Hassan, Hassan, Sadiq, Hassan, Shadab, Hautz, Wojciech, Haydar, Huda, Hederova, Stanislava, Hessissen, Laila, Hongeng, Suradej, Hordofa, Diriba F, Hubbard, G. Baker, Hummelen, Marlies, Husakova, Kristina, Hussein Al-Janabi, Allawi N, Ibanga, Affiong, Ida, Russo, Ilic, Vesna R, Islamov, Ziyavuddin, Jairaj, Vivekaraj, Janjua, Teyyeb, Jeeva, Irfan, Ji, Xunda, Jo, Dong Hyun, Jones, Michael M, Kabesha Amani, Theophile B, Kabore, Rolande L, Kaliki, Swathi, Kalinaki, Abubakar, Kamsang, Pius, Kantar, Mehmet, Kapelushnik, Noa, Kardava, Tamar, Kebudi, Rejin, Keomisy, Jonny, Kepak, Tomas, Ketteler, Petra, Khan, Zohora J, Khaqan, Hussain A, Khetan, Vikas, Khodabande, Alireza, Khotenashvili, Zaza, Kim, Jonathan W, Kim, Jeong Hun, Kiratli, Hayyam, Kivela, Tero T., Klett, Artur, Koç, Irem, Kosh Komba Palet, Jess Elio, Krivaitiene, Dalia, Kruger, Mariana, Kulvichit, Kittisak, Kuntorini, Mayasari W, Kyara, Alice, Lam, Geoffrey C, Larson, Scott A, Latinović, Slobodanka, Laurenti, Kelly D, Lavy, Yotam, Lavric Groznik, Alenka, Leverant, Amy A, Li, Cairui, Li, Kaijun, Limbu, Ben, Liu, Chun-Hsiu, Quah, BoonLong, López, Juan P, Lukamba, Robert M, Luna-Fineman, Sandra, Lutfi, Delfitri, Lysytsia, Lesia, Madgar, Shiran, Magrath, George N, Mahajan, Amita, Maitra, Puja, Maka, Erika, Makimbetov, Emil K, Maktabi, Azza, Maldonado, Carlos, Mallipatna, Ashwin, Manudhane, Rebecca, Manzhuova, Lyazat, Martín-Begue, Nieves, Masud, Sidra, Matende, Ibrahim O, Mattosinho, Clarissa CDS, Matua, Marchelo, Mayet, Ismail, Mbumba, Freddy B, McKenzie, John D, Mehrvar, Azim, Mengesha, Aemero A, Menon, Vikas, Mercado, Gary John V, Mets, Marilyn B, Midena, Edoardo, Miller, Audra, Mishra, Divyansh KC, Mndeme, Furahini G, Mohamedani, Ahmed A, Mohammad, Mona T, Moll, Annette C, Montero, Margarita M, Moreira, Claude, Mruthyunjaya, Prithvi, Msina, Mchikirwa S, Msukwa, Gerald, Mudaliar, Sangeeta S, Muma, Kangwa I M, Munier, Francis L, Murray, Timothy G, Musa, Kareem O, Mushtaq, Asma, Musika, Anne A, Mustak, Hamzah, Mustapha, Tajudeen, Muyen, Okwen M, Myezo, Khumo H, Naidu, Gita, Naidu, Natasha, Nair, Akshay Gopinathan, Natarajan, Sundaram, Naumenko, Larisa, Ndoye Roth, Paule Aïda, Nency, Yetty M, Neroev, Vladimir, Ng, Yvonne, Nikitovic, Marina, Nkanga, Elizabeth D, Nkumbe, Henry E, Numbi, Marcel N, Nummi, Kalle, Nuruddin, Murtuza, Nyaywa, Mutale, Nyirenda, Chinsisi, Obono-Obiang, Ghislaine, Oliver, Scott CN, Oporto, Joaquin, Ortega-Hernández, Miriam, Oscar, Alexander H, Ossandon, Diego, Pagarra, Halimah, Paintsil, Vivian, Paiva, Luisa, Palanivelu, Mahesh Shanmugam, Papyan, Ruzanna, Parrozzani, Raffaele, Pascual Morales, Claudia R, Paton, Katherine E, Pe'er, Jacob, Peralta Calvo, Jesús, Perić, Sanja, Pham, Chau TM, Philbert, Remezo, Plager, David A, Pochop, Pavel, Polania, Rodrigo A., Polyakov, Vladimir, Ponce, Jimena, Qadir, Ali O, Qayyum, Seema, Qian, Jiang, Refaeli, David, Rahman, Ardizal, Rajkarnikar, Purnima, Ramanjulu, Rajesh, Ramasubramanian, Aparna, Ramirez-Ortiz, Marco A, Randhawa, Jasmeen K, Randrianarisoa, Hoby Lalaina, Raobela, Léa, Rashid, Riffat, Reddy, M.A., Renner, Lorna A, Reynders, David, Ribadu, Dahiru, Ritter-Sovinz, Petra, Rogowska, Anna, Rojanaporn, Duangnate, Romero, Livia, Roy, Soma R, Saab, Raya H, Saakyan, Svetlana, Sabhan, Ahmed H, Sagoo, Mandeep S, Said, Azza MA, Saiju, Rohit, Salas, Beatriz, San Román Pacheco, Sonsoles, Sánchez, Gissela L, Sanchez Orozco, Alma Janeth, Sayalith, Phayvanh, Scanlan, Trish A, Schlüter, Sabrina, Schwab, Christoph, Sedaghat, Ahad, Seth, Rachna, Sgroi, Mariana, Shah, Ankoor S, Shakoor, Shawkat A, Sharma, Manoj K, Sherief, Sadik T, Shields, Carol L, Sia, David, Siddiqui, Sorath Noorani, Sidi cheikh, Sidi, Silva, Sónia, Singh, Arun D, Singh, Usha, Singha, Penny, Sitorus, Rita S, Skalet, Alison H, Soebagjo, Hendrian D, Sorochynska, Tetyana, Ssali, Grace, Stacey, Andrew W, Staffieri, Sandra E, Stahl, Erin D, Steinberg, David M, Stones, David K, Strahlendorf, Caron, Suarez, Maria Estela Coleoni, Sultana, Sadia, Sun, Xiantao, Superstein, Rosanne, Supriyadi, Eddy, Surukrattanaskul, Supawan, Suzuki, Shigenobu, Svojgr, Karel, Sylla, Fatoumata, Tamamyan, Gevorg, Tan, Deborah, Tandili, Alketa, Tang, Jing, Tarrillo Leiva, Fanny F, Tashvighi, Maryam, Tateshi, Bekim, Teh, Kok Hoi, Tehuteru, Edi S, Teixeira, Luiz F, Tekavcic Pompe, Manca, Thawaba, Abdullah Dahan M, Theophile, Tuyisabe, Toledano, Helen, Trang, Doan L, Traoré, Fousseyni, Tripathy, Devjyoti, Tuncer, Samuray, Tyau-Tyau, Harba, Umar, Ali B, Unal, Emel, Uner, Ogul E, Urbak, Steen F, Ushakova, Tatiana L, Usmanov, Rustam H, Valeina, Sandra, Valente, Paola, van Hoefen Wijsard, Milo, Vasquez Anchaya, Jacqueline Karina, Vaughan, Leon O, Veleva-Krasteva, Nevyana V, Verma, Nishant, Victor, Andi A, Viksnins, Maris, Villacís Chafla, Edwin G, Villegas, Victor M, Vishnevskia-Dai, Victoria, Waddell, Keith, Wali, Amina H, Wang, Yi-Zhuo, Wangtiraumnuay, Nutsuchar, Wetter, Julie, Widiarti, Widiarti, Wilson, Matthew W, Wime, Amelia DC, Wiwatwongwana, Atchareeya, Wiwatwongwana, Damrong, Wolley Dod, Charlotte, Wong, Emily S, Wongwai, Phanthipha, Wu, Si-qi, Xiang, Daoman, Xiao, Yishuang, Xu, Bing, Xue, Kang, Yaghy, Antonio, Yam, Jason C, Yang, Huasheng, Yanga, Jenny M, Yaqub, Muhammad A, Yarovaya, Vera A, Yarovoy, Andrey A, Ye, Huijing, Yee, Roberto I, Yousef, Yacoub A, Yuliawati, Putu, Zapata López, Arturo M, Zein, Ekhtelbenina, Zhang, Yi, Zhilyaeva, Katsiaryna, Zia, Nida, Ziko, Othman AO, Zondervan, Marcia, and Bowman, Richard

Published
2022
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6. 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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7. Healthcare providers' expected barriers and facilitators to the implementation of person‐centered long‐term follow‐up care for childhood cancer survivors: A PanCareFollowUp study.

Author

Breij, Dionne, Hjorth, Lars, Bouwman, Eline, Walraven, Iris, Kepak, Tomas, Kepakova, Katerina, Haupt, Riccardo, Muraca, Monica, Göttgens, Irene, Stollman, Iridi, Winther, Jeanette Falck, Kienesberger, Anita, Gsell, Hannah, Michel, Gisela, Blijlevens, Nicole, Pluijm, Saskia M. F., Roser, Katharina, Skinner, Roderick, Renard, Marleen, and Uyttebroeck, Anne

Subjects
MEDICAL personnel, CHILDHOOD cancer, SOCIAL support, CANCER survivors, GENERAL practitioners
Abstract

Background: Childhood cancer survivors face high risks of adverse late health effects. Long‐term follow‐up care for childhood cancer survivors is crucial to improve their health and quality of life. However, implementation remains a challenge. To support implementation of high‐quality long‐term follow‐up care, we explored expected barriers and facilitators for establishing this follow‐up care among healthcare providers from four European clinics. Methods: A qualitative study was conducted using four focus groups comprising 30 healthcare providers in total. The semi‐structured interview guide was developed based on the Grol and Wensing framework. Data was analyzed following a thematic analysis, combining both inductive and deductive approaches to identify barriers and facilitators across the six levels of Grol and Wensing: innovation, professional, patient, social, organizational and economic and political. Results: Most barriers were identified on the organizational level, including insufficient staff, time, capacity and psychosocial support. Other main barriers included limited knowledge of late effects among healthcare providers outside the long‐term follow‐up care team, inability of some survivors to complete the survivor questionnaire and financial resources. Main facilitators included motivated healthcare providers and survivors, a skilled hospital team, collaborations with important stakeholders like general practitioners, and psychosocial care facilities, utilization of the international collaboration and reporting long‐term follow‐up care results to convince hospital managers. Conclusion: This study identified several factors for successful implementation of long‐term follow‐up care for childhood cancer survivors. Our findings showed that specific attention should be given to knowledge, capacity, and financial issues, along with addressing psychosocial issues of survivors. [ABSTRACT FROM AUTHOR]

Published
2024
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8. Health of children born to childhood cancer survivors: Participant characteristics and methods of the Multicenter Offspring Study

Author

Sommerhäuser, Greta, Borgmann-Staudt, Anja, Schilling, Ralph, Frey, Eva, Hak, Jiri, Janhubová, Veronika, Kepakova, Katerina, Kepak, Tomas, Klco-Brosius, Stephanie, Krawczuk-Rybak, Maryna, Kruseova, Jarmila, Lackner, Herwig, Luks, Ales, Michel, Gisela, Panasiuk, Anna, Tamesberger, Melanie, Vetsch, Janine, and Balcerek, Magdalena

Published
2021
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9. 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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10. The impact of the temporal sequence of cranial radiotherapy and platin-based chemotherapy on hearing impairment in pediatric and adolescent CNS and head-and-neck cancer patients:A report from the PanCareLIFE consortium

Author

Scobioala, Sergiu, Parfitt, Ross, Matulat, Peter, Byrne, Julianne, Langer, Thorsten, Troschel, Fabian M., Hesping, Amélie E., Clemens, Eva, Kaatsch, Peter, Grabow, Desiree, Kaiser, Melanie, Spix, Claudia, Kremer, Leontien C., Calaminus, Gabriele, Baust, Katja, Kuehni, Claudia E., Weiss, Annette, Strebel, Sven, Kuonen, Rahel, Elsner, Susanne, Haupt, Riccardo, Garré, Maria Luisa, Gruhn, Bernd, Kepak, Tomas, Kepakova, Katerina, Winther, Jeanette Falck, Kenborg, Line, Rechnitzer, Catherine, Hasle, Henrik, Kruseova, Jarmila, Luks, Ales, Lackner, Herwig, Bielack, Stefan, Beck, Jörn Dirk, Jürgens, Heribert, van den Heuvel-Eibrink, Marry M., Zolk, Oliver, Eich, Hans Theodor, am Zehnhoff-Dinnesen, Antoinette, Scobioala, Sergiu, Parfitt, Ross, Matulat, Peter, Byrne, Julianne, Langer, Thorsten, Troschel, Fabian M., Hesping, Amélie E., Clemens, Eva, Kaatsch, Peter, Grabow, Desiree, Kaiser, Melanie, Spix, Claudia, Kremer, Leontien C., Calaminus, Gabriele, Baust, Katja, Kuehni, Claudia E., Weiss, Annette, Strebel, Sven, Kuonen, Rahel, Elsner, Susanne, Haupt, Riccardo, Garré, Maria Luisa, Gruhn, Bernd, Kepak, Tomas, Kepakova, Katerina, Winther, Jeanette Falck, Kenborg, Line, Rechnitzer, Catherine, Hasle, Henrik, Kruseova, Jarmila, Luks, Ales, Lackner, Herwig, Bielack, Stefan, Beck, Jörn Dirk, Jürgens, Heribert, van den Heuvel-Eibrink, Marry M., Zolk, Oliver, Eich, Hans Theodor, and am Zehnhoff-Dinnesen, Antoinette

Abstract

The impact of the temporal sequence by which cranial radiotherapy (CRT) and platin-based chemotherapy (PCth) are administered on sensorineural hearing loss (SNHL) in pediatric and adolescent central nervous system (CNS) and head-and-neck (HN) cancer patients has not yet been studied in detail. We examined the ototoxic effects of sequentially applied CRT and PCth. This study included children and adolescents with CNS and HN tumors who participated in the multicountry PanCareLIFE (PCL) consortium. Audiological outcomes were compared between patients who received CRT prior to PCth and those who received it afterwards. The incidence, degree and posttreatment progression of SNHL, defined as Muenster classification grade ≥MS2b, were evaluated in 141 patients. One hundred and nineteen patients were included in a time-to-onset analysis. Eighty-eight patients received CRT prior to PCth (Group 1) and 53 patients received PCth before CRT (Group 2). Over a median follow-up time of 1.6 years, 72.7% of patients in Group 1 experienced SNHL ≥ MS2b compared to 33.9% in Group 2 (P <.01). A time-to-onset analysis was performed for 74 patients from Group 1 and 45 patients from Group 2. Median time to hearing loss (HL) ≥ MS2b was 1.2 years in Group 1 and 4.4 years in Group 2 (P <.01). Thus, audiological outcomes were better for patients who received CRT after PCth than before. This finding should be further evaluated and considered within clinical practice in order to minimize hearing loss in children and adolescents with CNS and HN tumors.

Published
2024

11. 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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12. Implementation of the Short-Form 36 (SF-36) in childhood cancer survivors: An analysis on measurement properties across 5 European countries

Author

Baust, Katja, primary, Calaminus, Gabriele, additional, Berger, Claire, additional, Byrne, Julianne, additional, Grabow, Desiree, additional, van den Heuvel-Eibrink, Marry M., additional, Kaiser, Melanie, additional, Kepak, Tomas, additional, Kremer, Leontien C. M., additional, Kruseova, Jarmila, additional, Kuonen, Rahel, additional, Roser, Katharina, additional, Spix, Claudia, additional, Maurice-Stam, Heleen, additional, Kuehni, Claudia E., additional, and Sommer, Grit, additional

Published
2024
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14. Plerixafor combined with standard regimens for hematopoietic stem cell mobilization in pediatric patients with solid tumors eligible for autologous transplants: two-arm phase I/II study (MOZAIC)

Author

Morland, Bruce, Kepak, Tomas, Dallorso, Sandro, Sevilla, Julian, Murphy, Dermot, Luksch, Roberto, Yaniv, Isaac, Bader, Peter, Rößler, Jochen, Bisogno, Gianni, Maecker-Kolhoff, Britta, Lang, Peter, Zwaan, C. Michel, Sumerauer, David, Kriván, Gergely, Bernard, John, Liu, Qianying, Doyle, Eileen, and Locatelli, Franco

Published
2020
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16. Perceived barriers and facilitators to health behaviors in European childhood cancer survivors:A qualitative PanCareFollowUp study

Author

Bouwman, Eline, Pluijm, Saskia M.F., Stollman, Iridi, Araujo-Soares, Vera, Blijlevens, Nicole M.A., Follin, Cecilia, Winther, Jeanette F., Hjorth, Lars, Kepak, Tomas, Kepakova, Katerina, Kremer, Leontien C.M., Muraca, Monica, van der Pal, Helena J.H., Schneider, Carina, Uyttebroeck, Anne, Vercruysse, Gertrui, Skinner, Rod, Brown, Morven C., Hermens, Rosella P.M.G., and Loonen, Jacqueline J.

Subjects
cancer risk factors, cancer prevention, Cancer Survivors, Health Behavior, Humans, behavioral science, Focus Groups, Child, survival, Neoplasms/epidemiology, Qualitative Research, pediatric cancer
Abstract

Background: Healthy behaviors, that is, engaging in regular physical activities, maintaining a healthy diet, limiting alcohol consumption, and avoiding tobacco and drug use, decrease the risk of developing late adverse health conditions in childhood cancer survivors. However, childhood cancer survivors may experience barriers to adopting and maintaining healthy behaviors. This study aimed to assess these barriers and facilitators to health behavior adoption and maintenance in childhood cancer survivors. Methods: A focus group (n = 12) and semi-structured telephone interviews (n = 20) were conducted with a selected sample of European and Dutch childhood cancer survivors, respectively. The Theoretical Domains Framework (TDF) was used to inform the topic guide and analysis. Inductive thematic analysis was applied to identify categories relating to barriers and facilitators of health behavior adoption and maintenance, after which they were deductively mapped onto the TDF. Results: Ten TDF domains were identified in the data of which “Knowledge,” “Beliefs about consequences,” “Environmental context and resources,” and “Social influences” were most commonly reported. Childhood cancer survivors expressed a need for knowledge on the importance of healthy behaviors, possibly provided by healthcare professionals. They indicated physical and long-term benefits of healthy behaviors, available professional support, and a supporting and health-consciously minded work and social environment to be facilitators. Barriers were mostly related to a lack of available time and an unhealthy environment. Lastly, (social) media was perceived as both a barrier and a facilitator to healthy behaviors. Conclusion: This study has identified education and available professional support in health behaviors and the relevance of healthy behaviors for childhood cancer survivors as key opportunities for stimulating health behavior adoption in childhood cancer survivors. Incorporating health behavior support and interventions for this population should therefore be a high priority.

Published
2023

17. Auditory Complications among Childhood Cancer Survivors and Health-related Quality of Life: A PanCareLIFE study

Author

Strebel, Sven, primary, Baust, Katja, additional, Grabow, Desiree, additional, Byrne, Julianne, additional, Langer, Thorsten, additional, Zehnhoff-Dinnesen, Antoinette am, additional, Kuonen, Rahel, additional, Weiss, Annette, additional, Kepak, Tomas, additional, Kruseova, Jarmila, additional, Berger, Claire, additional, Calaminus, Gabriele, additional, Sommer, Grit, additional, and Kuehni, Claudia E., additional

Published
2023
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18. European Cancer Summit 2022 submission for Digital Health NetworkThe Survivorship Passport: a digital tool for better and homogeneous long-term care for childhood cancer survivors

Author

Grabow, Desiree, primary, Filbert, Anna-Liesa, additional, Saraceno, Davide, additional, Kremer, Leontien, additional, Skinner, Rod, additional, Hjorth, Lars, additional, Ladenstein, Ruth, additional, Scheinemann, Katrin, additional, Kepak, Tomas, additional, Kepakova, Katerina, additional, Muraca, Monica, additional, and Haupt, Riccardo, additional

Published
2023
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19. Additional file 1 of 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.

Abstract

Additional file 1. SPIRIT 2013 Checklist.

Published
2023
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20. Additional file 3 of 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.

Abstract

Additional file 3. Behavioural Change Techniques and their presumed Mechanisms of Action.

Published
2023
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21. Additional file 2 of 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.

Abstract

Additional file 2. The TIDieR (Template for Intervention Description and Replication) Checklist.

Published
2023
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22. Healthcare professionals' perceived barriers and facilitators of health behavior support provision: A qualitative study

Author

Bouwman, Eline, Pluijm, Saskia M. F., Stollman, Iridi, Araujo‐Soares, Vera, Blijlevens, Nicole M. A., Follin, Cecilia, Falck Winther, Jeanette, Hjorth, Lars, Kepak, Tomas, Kepakova, Katerina, Kremer, Leontien C. M., Muraca, Monica, van der Pal, Helena J. H., Schneider, Carina, Uyttebroeck, Anne, Vercruysse, Gertrui, Skinner, Roderick, Brown, Morven C., Hermens, Rosella P. M. G., Loonen, Jacqueline J., Paediatric Oncology, Paediatric Pulmonology, CCA - Cancer Treatment and Quality of Life, and AR&D - Amsterdam Reproduction & Development

Subjects
Cancer Research, All institutes and research themes of the Radboud University Medical Center, Oncology, screening, clinical management, Radiology, Nuclear Medicine and imaging, survival, Women's cancers Radboud Institute for Health Sciences [Radboudumc 17], Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18], Rare cancers Radboud Institute for Health Sciences [Radboudumc 9], pediatric cancer
Abstract

Contains fulltext : 291775.pdf (Publisher’s version ) (Open Access) BACKGROUND: Childhood cancer survivors (CCSs) have an increased risk of developing chronic health conditions. Evidence suggests that poor health behaviors further increase health risks. Healthcare professionals (HCPs) involved in survivorship care have a key role in providing health behavior support (HBS) but can feel limited in their ability to do so. This study aims to explore European HCPs perceived facilitators and barriers to providing HBS to CCSs. METHODS: Five focus groups with 30 HCPs from survivorship care clinics across Europe were conducted. Topic guides were informed by the Theoretical Domains Framework (TDF) to capture domains that may influence provision of HBS. Focus groups were analyzed with thematic analysis. Transcripts were inductively coded, after which axial coding was applied to organize codes into categories. Finally, categories were mapped onto the TDF domains. RESULTS: Nine TDF domains were identified in the data. The most commonly reported TDF domains were "Knowledge", "Skills", and "Environmental context and resources". HCPs indicated that their lack of knowledge of the association between late effects and health behaviors, besides time restrictions, were barriers to HBS. Facilitators for HBS included possession of skills needed to pass on health behavior information, good clinic organization, and an established network of HCPs. CONCLUSIONS: This study identified education and training of HCPs as key opportunities to improve HBS. Survivorship care clinics should work towards establishing well-integrated structured care with internal and external networks including HBS being part of routine care. Proper understanding of facilitators and barriers should lead to better survivorship care for CCSs.

Published
2022

23. Perceived barriers and facilitators to health behaviors in European childhood cancer survivors: A qualitative PanCareFollowUp study.

Author

Bouwman, Eline, Pluijm, Saskia M. F., Stollman, Iridi, Araujo‐Soares, Vera, Blijlevens, Nicole M. A., Follin, Cecilia, Winther, Jeanette F., Hjorth, Lars, Kepak, Tomas, Kepakova, Katerina, Kremer, Leontien C. M., Muraca, Monica, van der Pal, Helena J. H., Schneider, Carina, Uyttebroeck, Anne, Vercruysse, Gertrui, Skinner, Rod, Brown, Morven C., Hermens, Rosella P. M. G., and Loonen, Jacqueline J.

Subjects
HEALTH behavior, CHILDHOOD cancer, CANCER survivors, MEDICAL personnel, SOCIAL influence, ALCOHOL drinking
Abstract

Background: Healthy behaviors, that is, engaging in regular physical activities, maintaining a healthy diet, limiting alcohol consumption, and avoiding tobacco and drug use, decrease the risk of developing late adverse health conditions in childhood cancer survivors. However, childhood cancer survivors may experience barriers to adopting and maintaining healthy behaviors. This study aimed to assess these barriers and facilitators to health behavior adoption and maintenance in childhood cancer survivors. Methods: A focus group (n = 12) and semi‐structured telephone interviews (n = 20) were conducted with a selected sample of European and Dutch childhood cancer survivors, respectively. The Theoretical Domains Framework (TDF) was used to inform the topic guide and analysis. Inductive thematic analysis was applied to identify categories relating to barriers and facilitators of health behavior adoption and maintenance, after which they were deductively mapped onto the TDF. Results: Ten TDF domains were identified in the data of which "Knowledge," "Beliefs about consequences," "Environmental context and resources," and "Social influences" were most commonly reported. Childhood cancer survivors expressed a need for knowledge on the importance of healthy behaviors, possibly provided by healthcare professionals. They indicated physical and long‐term benefits of healthy behaviors, available professional support, and a supporting and health‐consciously minded work and social environment to be facilitators. Barriers were mostly related to a lack of available time and an unhealthy environment. Lastly, (social) media was perceived as both a barrier and a facilitator to healthy behaviors. Conclusion: This study has identified education and available professional support in health behaviors and the relevance of healthy behaviors for childhood cancer survivors as key opportunities for stimulating health behavior adoption in childhood cancer survivors. Incorporating health behavior support and interventions for this population should therefore be a high priority. [ABSTRACT FROM AUTHOR]

Published
2023
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24. Genetic variation in gonadal impairment in female survivors of childhood cancer: a PanCareLIFE study protocol

Author

van der Kooi, Anne-Lotte L. F., Clemens, Eva, Broer, Linda, Zolk, Oliver, Byrne, Julianne, Campbell, Helen, van den Berg, Marleen, Berger, Claire, Calaminus, Gabriele, Dirksen, Uta, Winther, Jeanette Falck, Fosså, Sophie D, Grabow, Desiree, Haupt, Riccardo, Kaiser, Melanie, Kepak, Tomas, Kremer, Leontien, Kruseova, Jarmila, Modan-Moses, Dalit, Ranft, Andreas, Spix, Claudia, Kaatsch, Peter, Laven, Joop S. E., van Dulmen-den Broeder, Eline, Uitterlinden, André G., van den Heuvel-Eibrink, Marry M., and on behalf of the PanCareLIFE Consortium

Published
2018
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25. The Use of Assisted Reproductive Technology by European Childhood Cancer Survivors

Author

Borgmann-Staudt, Anja, Simon, Michael, Sommerhaeuser, Greta, Fernández-González, Marta-Julia, Friedrich, Lucía Alacán, Klco-Brosius, Stephanie, Kepak, Tomas, Kruseova, Jarmila, Michel, Gisela, Panasiuk, Anna, Schmidt, Sandrin, Lotz, Laura, and Balcerek, Magdalena

Subjects
Male, Reproductive Techniques, Assisted, Infant, Newborn, Pregnancy Outcome, childhood and adolescence, Offspring, Cancer Survivors, Pregnancy, Semen, Neoplasms, Humans, Premature Birth, Female, health outcome, Prospective Studies, ddc:610, Survivor, Child, A.R.T, ART, 600 Technik, Medizin, angewandte Wissenschaften::610 Medizin und Gesundheit::610 Medizin und Gesundheit, Cancer
Abstract

CCS often wish to have biological children yet harbour concerns about fertility impairment, pregnancy risks and the general health risks of prospective offspring. To clarify these concerns, health outcomes in survivor offspring born following ART (n = 74, 4.5%) or after spontaneous conception (n = 1585) were assessed in our European offspring study by descriptive and bivariate analysis. Outcomes were compared to a sibling offspring cohort (n = 387) in a 4:1 matched-pair analysis (n = 1681). (i) Survivors were more likely to employ ART than their siblings (4.5% vs. 3.7%, p = 0.501). Successful pregnancies were achieved after a median of one cycle with, most commonly, intracytoplasmic sperm injection (ICSI) using non-cryopreserved oocytes/sperm. (ii) Multiple-sibling births (p < 0.001, 29.7% vs. 2.5%), low birth weight (p < 0.001; OR = 3.035, 95%-CI = 1.615–5.706), and preterm birth (p < 0.001; OR = 2.499, 95%-CI = 1.401–4.459) occurred significantly more often in survivor offspring following ART utilisation than in spontaneously conceived children. ART did not increase the prevalence of childhood cancer, congenital malformations or heart defects. (iii) These outcomes had similar prevalences in the sibling population. In our explorative study, we could not detect an influence on health outcomes when known confounders, such as multiple births, were taken into account., + ID der Publikation: unilu_59897 + Sprache: Englisch + Letzte Aktualisierung: 2022-09-26 16:30:11

Published
2022
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26. The Use of Assisted Reproductive Technology by European Childhood Cancer Survivors

Author

Borgmann-Staudt, Anja, primary, Michael, Simon, additional, Sommerhaeuser, Greta, additional, Fernández-González, Marta-Julia, additional, Friedrich, Lucía Alacán, additional, Klco-Brosius, Stephanie, additional, Kepak, Tomas, additional, Kruseova, Jarmila, additional, Michel, Gisela, additional, Panasiuk, Anna, additional, Schmidt, Sandrin, additional, Lotz, Laura, additional, and Balcerek, Magdalena, additional

Published
2022
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27. Healthcare professionals' perceived barriers and facilitators of health behavior support provision: A qualitative study.

Author

Bouwman, Eline, Pluijm, Saskia M. F., Stollman, Iridi, Araujo‐Soares, Vera, Blijlevens, Nicole M. A., Follin, Cecilia, Falck Winther, Jeanette, Hjorth, Lars, Kepak, Tomas, Kepakova, Katerina, Kremer, Leontien C. M., Muraca, Monica, van der Pal, Helena J. H., Schneider, Carina, Uyttebroeck, Anne, Vercruysse, Gertrui, Skinner, Roderick, Brown, Morven C., Hermens, Rosella P. M. G., and Loonen, Jacqueline J.

Subjects
HEALTH behavior, MEDICAL personnel, INFORMATION-seeking behavior, QUALITATIVE research, THEMATIC analysis
Abstract

Background: Childhood cancer survivors (CCSs) have an increased risk of developing chronic health conditions. Evidence suggests that poor health behaviors further increase health risks. Healthcare professionals (HCPs) involved in survivorship care have a key role in providing health behavior support (HBS) but can feel limited in their ability to do so. This study aims to explore European HCPs perceived facilitators and barriers to providing HBS to CCSs. Methods: Five focus groups with 30 HCPs from survivorship care clinics across Europe were conducted. Topic guides were informed by the Theoretical Domains Framework (TDF) to capture domains that may influence provision of HBS. Focus groups were analyzed with thematic analysis. Transcripts were inductively coded, after which axial coding was applied to organize codes into categories. Finally, categories were mapped onto the TDF domains. Results: Nine TDF domains were identified in the data. The most commonly reported TDF domains were "Knowledge", "Skills", and "Environmental context and resources". HCPs indicated that their lack of knowledge of the association between late effects and health behaviors, besides time restrictions, were barriers to HBS. Facilitators for HBS included possession of skills needed to pass on health behavior information, good clinic organization, and an established network of HCPs. Conclusions: This study identified education and training of HCPs as key opportunities to improve HBS. Survivorship care clinics should work towards establishing well‐integrated structured care with internal and external networks including HBS being part of routine care. Proper understanding of facilitators and barriers should lead to better survivorship care for CCSs. [ABSTRACT FROM AUTHOR]

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

Author

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

Published
2022
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30. Incidence of Retinoblastoma Has Increased : Results from 40 European Countries

Author

Global Retinoblastoma Study Group, Stacey, Andrew W., Bowman, Richard, Foster, Allen, Kivelä, Tero T., Kepak, Tomas, HUS Head and Neck Center, and Silmäklinikka

Subjects
Familial, Genetic, Incidence, Fitness, Retinoblastoma, 3125 Otorhinolaryngology, ophthalmology
Abstract

Funding Information: Obtained funding: N/A; Study was performed as part of the regular employment duties of all authors at their institutions. No additional funding was provided. Non

Published
2021

31. 290 Late effects of the treatment for childhood cancer

Author

Roganovic, Jelena, primary, Bardi, Edit, additional, Berger, Claire, additional, Hartogh, Jaap den, additional, Grabow, Desiree, additional, Hjorth, Lars, additional, Kepak, Tomas, additional, Koukougianni, Menia, additional, Langer, Thorsten, additional, Pavasovic, Vesna, additional, Rizvi, Katie, additional, Ronckers, Cecile, additional, Scheinemann, Katrin, additional, Zaletel, Lorna Zadravec, additional, and Pal, Helena van der, additional

Published
2021
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32. Incidence of Retinoblastoma Has Increased: Results from 40 European Countries

Author

Stacey, Andrew W., primary, Bowman, Richard, additional, Foster, Allen, additional, Kivelä, Tero T., additional, Munier, Francis L., additional, Cassoux, Nathalie, additional, Fabian, Ido Didi, additional, Harby, Lamis Al, additional, Portabella, Silvia Alarcón, additional, Alia, Donjeta B., additional, All-Eriksson, Charlotta, additional, Antonino, Romanzo, additional, Astbury, Nicholas J., additional, Balaguer, Julia, additional, Balwierz, Walentyna, additional, Barranco, Honorio, additional, Bascaran, Covadonga, additional, Popovic, Maja Beck, additional, Biewald, Eva M., additional, Bobrova, Nadia, additional, Bornfeld, Norbert, additional, Brichard, Bénédicte G., additional, Blum, Sharon, additional, Capra, Michael, additional, Castela, Guilherme, additional, Català-Mora, Jaume, additional, Chantada, Guillermo L., additional, Chernodrinska, Violeta S., additional, Cieslik, Krzysztof, additional, Comsa, Codruta, additional, Correa Llano, Maria G., additional, Csóka, Monika, additional, De Potter, Patrick, additional, Desjardins, Laurence, additional, Dragomir, Monica D., additional, Fernández-Teijeiro, Ana, additional, Aldana, David García, additional, Gregersen, Pernille A., additional, Gomel, Nir, additional, Hadjistilianou, Theodora, additional, Hederova, Stanislava, additional, Hummlen, Marlies, additional, Husakova, Kristina, additional, Ida, Russo, additional, Ilic, Vesna R., additional, Jenkinson, Helen, additional, Kapelushnik, Noa, additional, Kardava, Tamar, additional, Keren-Froim, Naama, additional, Kepak, Tomas, additional, Khotenashvili, Zaza, additional, Klett, Artur, additional, Krivaitiene, Dalia, additional, Latinović, Slobodanka, additional, Lumbroso, Livia, additional, Lysytsia, Lesia, additional, Maka, Erika, additional, Begue, Nieves Martín, additional, Midena, Edoardo, additional, Moll, Annette C., additional, Murgoi, Gabriela, additional, Naumenko, Larisa, additional, Neroev, Vladimir, additional, Nikitovic, Marina, additional, Olechowski, Andrzej, additional, Papyan, Ruzanna, additional, Parrozzani, Raffaele, additional, Parulekar, Manoj V., additional, Pawinska-Wasikowska, Katarzyna, additional, Perić, Sanja, additional, Pochop, Pavel, additional, Polyakov, Vladimir G., additional, Reddy, M. Ashwin, additional, Ritter-Sovinz, Petra, additional, Saakyan, Svetlana, additional, Sagoo, Mandeep S., additional, San Román Pacheco, Sonsoles, additional, Seregard, Stefan, additional, Silva, Sónia, additional, Sorochynska, Tetyana, additional, Stathopoulos, Christina, additional, Kranjc, Branka Stirn, additional, Svojgr, Karel, additional, Tamamyan, Gevorg, additional, Tandili, Alketa, additional, Tateshi, Bekim, additional, Pompe, Manca Tekavcic, additional, Urbak, Steen F., additional, Ushakova, Tatiana L., additional, Valeina, Sandra, additional, van Hoefen Wijsard, Milo, additional, Veleva-Krasteva, Nevyana V., additional, Viksnins, Maris, additional, Wackernagel, Werner, additional, Dod, Charlotte Wolley, additional, Yarovaya, Vera A., additional, Yarovoy, Andrey A., additional, Zhilyaeva, Katsiaryna, additional, and Zondervan, Marcia, additional

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

Author

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

Published
2021
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34. Possible modification of BRSK1 on the risk of alkylating chemotherapy-related reduced ovarian function

Author

Van Der Kooi, Anne Lotte L.F., Van Dijk, Marloes, Broer, Linda, Van Den Berg, Marleen H., Laven, Joop S.E., Van Leeuwen, Flora E., Lambalk, Cornelis B., Overbeek, Annelies, Loonen, Jacqueline J., Van Der Pal, Helena J., Tissing, Wim J., Versluys, Birgitta, Bresters, Dorine, Beerendonk, Catharina C.M., Ronckers, Cécile R., Van Der Heiden-Van Der Loo, Margriet, Kaspers, Gertjan L., De Vries, Andrica C.H., Robison, Leslie L., Hudson, Melissa M., Chemaitilly, Wassim, Byrne, Julianne, Berger, Claire, Clemens, Eva, Dirksen, Uta, Falck Winther, Jeanette, Fosså, Sophie D., Grabow, Desiree, Haupt, Riccardo, Kaiser, Melanie, Kepak, Tomas, Kruseova, Jarmila, Modan-Moses, Dalit, Pluijm, Saskia M.F., Spix, Claudia, Zolk, Oliver, Kaatsch, Peter, Krijthe, Jesse H., Kremer, Leontien C., Yasui, Yutaka, Brooke, Russell J., Uitterlinden, André G., Van Den Heuvel-Eibrink, Marry M., Van Dulmen-Den Broeder, Eline, Van Der Kooi, Anne Lotte L.F., Van Dijk, Marloes, Broer, Linda, Van Den Berg, Marleen H., Laven, Joop S.E., Van Leeuwen, Flora E., Lambalk, Cornelis B., Overbeek, Annelies, Loonen, Jacqueline J., Van Der Pal, Helena J., Tissing, Wim J., Versluys, Birgitta, Bresters, Dorine, Beerendonk, Catharina C.M., Ronckers, Cécile R., Van Der Heiden-Van Der Loo, Margriet, Kaspers, Gertjan L., De Vries, Andrica C.H., Robison, Leslie L., Hudson, Melissa M., Chemaitilly, Wassim, Byrne, Julianne, Berger, Claire, Clemens, Eva, Dirksen, Uta, Falck Winther, Jeanette, Fosså, Sophie D., Grabow, Desiree, Haupt, Riccardo, Kaiser, Melanie, Kepak, Tomas, Kruseova, Jarmila, Modan-Moses, Dalit, Pluijm, Saskia M.F., Spix, Claudia, Zolk, Oliver, Kaatsch, Peter, Krijthe, Jesse H., Kremer, Leontien C., Yasui, Yutaka, Brooke, Russell J., Uitterlinden, André G., Van Den Heuvel-Eibrink, Marry M., and Van Dulmen-Den Broeder, Eline

Abstract

STUDY QUESTION: Do genetic variations in the DNA damage response pathway modify the adverse effect of alkylating agents on ovarian function in female childhood cancer survivors (CCS)? SUMMARY ANSWER: Female CCS carrying a common BR serine/threonine kinase 1 (BRSK1) gene variant appear to be at 2.5-fold increased odds of reduced ovarian function after treatment with high doses of alkylating chemotherapy. WHAT IS KNOWN ALREADY: Female CCS show large inter-individual variability in the impact of DNA-damaging alkylating chemotherapy, given as treatment of childhood cancer, on adult ovarian function. Genetic variants in DNA repair genes affecting ovarian function might explain this variability. STUDY DESIGN, SIZE, DURATION: CCS for the discovery cohort were identified from the Dutch Childhood Oncology Group (DCOG) LATER VEVO-study, a multi-centre retrospective cohort study evaluating fertility, ovarian reserve and risk of premature menopause among adult female 5-year survivors of childhood cancer. Female 5-year CCS, diagnosed with cancer and treated with chemotherapy before the age of 25 years, and aged 18 years or older at time of study were enrolled in the current study. Results from the discovery Dutch DCOG-LATER VEVO cohort (n = 285) were validated in the pan-European PanCareLIFE (n = 465) and the USA-based St. Jude Lifetime Cohort (n = 391). PARTICIPANTS/MATERIALS, SETTING, METHODS: To evaluate ovarian function, anti-Müllerian hormone (AMH) levels were assessed in both the discovery cohort and the replication cohorts. Using additive genetic models in linear and logistic regression, five genetic variants involved in DNA damage response were analysed in relation to cyclophosphamide equivalent dose (CED) score and their impact on ovarian function. Results were then examined using fixed-effect meta-analysis. MAIN RESULTS AND THE ROLE OF CHANCE: Meta-analysis across the three independent cohorts showed a significant interaction effect (P = 3.0 × 10-4) between rs116683

Published
2021

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

Author

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

Published
2021

37. Late effects of childhood cancer recorded at a single outpatient clinic over the course of one year: implications for follow-up care.

Author

KEPAK, Tomas, HRSTKOVA, Hana, BAJCIOVA, Viera, DUSEK, Vitezslav, HOLIKOVA, Marta, STRUBLOVA, Lucie, and KEPAKOVA, Katerina

Subjects
CHILDHOOD cancer, PATIENT reported outcome measures, MORBID obesity, PATIENT education, DISEASE relapse
Abstract

The paper provides a descriptive analysis of medical data and selected patient-reported outcomes from a group of 133 survivors of childhood cancer recruited at St. Anne’s University Hospital in Brno, Czech Republic, over the course of one year. The participants were 18-53 years old (mean age 27.9 years) and had been diagnosed with childhood cancer in the period 1979-2016. Treatment data and data on relevant health outcomes were extracted from the medical records and categorized. Patient-reported outcomes were measured using the clinic’s questionnaires completed by survivors prior to the medical examination. The most frequent adverse health outcomes in the study were dyslipidemia (50%) and overweight, obesity, and even morbid obesity (45%, 15%, and 1.5%, respectively). Endocrinopathies were observed in more than one-third (35.3%) of the survivors, followed by nephropathy (33.8%). Cardiovascular abnormalities were found in 9.7% of the survivors and fertility impairment in 9%. 38% of the survivors reported chronic fatigue and one-half (51%) reported pain. 20% of the cohort face mobility impairment. A remarkably high percentage of the survivors (70%) communicated some level of mental health issues. Moderate to severe anxiety and/or depression was reported by 25% of the survivors. 40% of the survivors experienced strong fears of disease recurrence, another 40% reported mild or moderate fears. Fear of late effects was communicated by 83% of the survivors, with 38% experiencing high levels of concerns. Only 8% of the survivors had no adverse health outcome. The rate of somatic and mental health outcomes identified in our sample is high. Some of the most frequent outcomes are mutually interconnected and modifiable, which highlights the need for patient education on a healthy lifestyle. There is also a clear need for improved psychological support for childhood cancer survivors to mitigate unnecessary anxieties resulting from unsubstantiated health concerns. Dissemination of personalized and positive messages should be part of routine follow-up care. [ABSTRACT FROM AUTHOR]

Published
2022
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38. Possible modification of BRSK1 on the risk of alkylating chemotherapy-related reduced ovarian function

Author

van der Kooi, Anne-Lotte L F, primary, van Dijk, Marloes, additional, Broer, Linda, additional, van den Berg, Marleen H, additional, Laven, Joop S E, additional, van Leeuwen, Flora E, additional, Lambalk, Cornelis B, additional, Overbeek, Annelies, additional, Loonen, Jacqueline J, additional, van der Pal, Helena J, additional, Tissing, Wim J, additional, Versluys, Birgitta, additional, Bresters, Dorine, additional, Beerendonk, Catharina C M, additional, Ronckers, Cécile R, additional, van der Heiden-van der Loo, Margriet, additional, Kaspers, Gertjan L, additional, de Vries, Andrica C H, additional, Robison, Leslie L, additional, Hudson, Melissa M, additional, Chemaitilly, Wassim, additional, Byrne, Julianne, additional, Berger, Claire, additional, Clemens, Eva, additional, Dirksen, Uta, additional, Falck Winther, Jeanette, additional, Fosså, Sophie D, additional, Grabow, Desiree, additional, Haupt, Riccardo, additional, Kaiser, Melanie, additional, Kepak, Tomas, additional, Kruseova, Jarmila, additional, Modan-Moses, Dalit, additional, Pluijm, Saskia M F, additional, Spix, Claudia, additional, Zolk, Oliver, additional, Kaatsch, Peter, additional, Krijthe, Jesse H, additional, Kremer, Leontien C, additional, Yasui, Yutaka, additional, Brooke, Russell J, additional, Uitterlinden, André G, additional, van den Heuvel-Eibrink, Marry M, additional, and van Dulmen-den Broeder, Eline, additional

Published
2021
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39. European Healthcare Professionals’ Perceived Barriers and Facilitators to Provision of Health Behavior Support for Childhood Cancer Survivors: A Qualitative PanCareFollowUp Study

Author

Bouwman, Eline, primary, Pluijm, Saskia M.F., additional, Stollman, Iridi, additional, Araujo-Soares, Vera, additional, Blijlevens, Nicole M.A., additional, Follin, Cecilia, additional, Winther, Jeanette Falck, additional, Hjorth, Lars, additional, Kepak, Tomas, additional, Kepakova, Katerina, additional, Kremer, Leontien C.M., additional, Muraca, Monica, additional, van der Pal, Helena J.H., additional, Schneider, Carina, additional, Uyttebroeck, Anne, additional, Skinner, Rod, additional, Vercruysse, Gertrui, additional, Brown, Morven C., additional, Hermens, Rosella P.M.G., additional, and Loonen, Jacqueline J., additional

Published
2021
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40. Usefulness of current candidate genetic markers to identify childhood cancer patients at risk for platinum-induced ototoxicity: Results of the European PanCareLIFE cohort study

Author

Langer, Thorsten, primary, Clemens, Eva, additional, Broer, Linda, additional, Maier, Lara, additional, Uitterlinden, André G., additional, de Vries, Andrica C.H., additional, van Grotel, Martine, additional, Pluijm, Saskia F.M., additional, Binder, Harald, additional, Mayer, Benjamin, additional, von dem Knesebeck, Annika, additional, Byrne, Julianne, additional, van Dulmen-den Broeder, Eline, additional, Crocco, Marco, additional, Grabow, Desiree, additional, Kaatsch, Peter, additional, Kaiser, Melanie, additional, Spix, Claudia, additional, Kenborg, Line, additional, Winther, Jeanette F., additional, Rechnitzer, Catherine, additional, Hasle, Henrik, additional, Kepak, Tomas, additional, van der Kooi, Anne-Lotte F., additional, Kremer, Leontien C., additional, Kruseova, Jarmila, additional, Bielack, Stefan, additional, Sorg, Benjamin, additional, Hecker-Nolting, Stefanie, additional, Kuehni, Claudia E., additional, Ansari, Marc, additional, Kompis, Martin, additional, van der Pal, Heleen, additional, Parfitt, Ross, additional, Deuster, Dirk, additional, Matulat, Peter, additional, Tillmanns, Amelie, additional, Tissing, Wim J.E., additional, Beck, Jörn D., additional, Elsner, Susanne, additional, am Zehnhoff-Dinnesen, Antoinette, additional, van den Heuvel-Eibrink, Marry M., additional, and Zolk, Oliver, additional

Published
2020
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41. Association of candidate pharmacogenetic markers with platinum-induced ototoxicity: PanCareLIFE dataset

Author

Langer, Thorsten, primary, Clemens, Eva, additional, Broer, Linda, additional, Maier, Lara, additional, Uitterlinden, André G., additional, de Vries, Andrica C.H., additional, van Grotel, Martine, additional, Pluijm, Saskia F.M., additional, Binder, Harald, additional, Mayer, Benjamin, additional, von dem Knesebeck, Annika, additional, Byrne, Julianne, additional, van Dulmen-den Broeder, Eline, additional, Crocco, Marco, additional, Grabow, Desiree, additional, Kaatsch, Peter, additional, Kaiser, Melanie, additional, Spix, Claudia, additional, Kenborg, Line, additional, Winther, Jeanette F., additional, Rechnitzer, Catherine, additional, Hasle, Henrik, additional, Kepak, Tomas, additional, van der Kooi, Anne-Lotte F., additional, Kremer, Leontien C., additional, Kruseova, Jarmila, additional, Bielack, Stefan, additional, Sorg, Benjamin, additional, Hecker-Nolting, Stefanie, additional, Kuehni, Claudia E., additional, Ansari, Marc, additional, Kompis, Martin, additional, van der Pal, Heleen J., additional, Parfitt, Ross, additional, Deuster, Dirk, additional, Matulat, Peter, additional, Tillmanns, Amelie, additional, Tissing, Wim J.E., additional, Beck, Jörn D., additional, Elsner, Susanne, additional, am Zehnhoff-Dinnesen, Antoinette, additional, van den Heuvel-Eibrink, Marry M., additional, and Zolk, Oliver, additional

Published
2020
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42. Travel burden and clinical presentation of retinoblastoma: analysis of 1024 patients from 43 African countries and 518 patients from 40 European countries

Author

Fabian, Ido Didi, primary, Stacey, Andrew W, additional, Foster, Allen, additional, Kivelä, Tero T, additional, Munier, Francis L., additional, Keren-Froim, Naama, additional, Gomel, Nir, additional, Cassoux, Nathalie, additional, Sagoo, Mandeep S, additional, Reddy, M Ashwin, additional, Harby, Lamis Al, additional, Zondervan, Marcia, additional, Bascaran, Covadonga, additional, Abdallah, Elhassan, additional, Abdullahi, Shehu U, additional, Boubacar, Sahadatou Adamou, additional, Ademola-Popoola, Dupe S, additional, Adio, Adedayo, additional, Aghaji, Ada E, additional, Portabella, Silvia Alarcón, additional, Alfa Bio, Amadou I, additional, Ali, Amany M, additional, Alia, Donjeta B, additional, All-Eriksson, Charlotta, additional, Almeida, Argentino A, additional, Alsawidi, Khalifa M, additional, Antonino, Romanzo, additional, Astbury, Nicholas J, additional, Atsiaya, Rose, additional, Balaguer, Julia, additional, Balwierz, Walentyna, additional, Barranco, Honorio, additional, Popovic, Maja Beck, additional, Benmiloud, Sarra, additional, Guebessi, Nissrine Bennani, additional, Berete, Rokia C, additional, Biddulph, Shelley J, additional, Biewald, Eva M, additional, Blum, Sharon, additional, Bobrova, Nadia, additional, Boehme, Marianna, additional, Bornfeld, Norbert, additional, Bouda, Gabrielle C, additional, Bouguila, Hédi, additional, Boumedane, Amaria, additional, Brichard, Bénédicte G, additional, l, Michael Capra, additional, Castela, Guilherme, additional, Català-Mora, Jaume, additional, Chantada, Guillermo L, additional, Chernodrinska, Violeta S, additional, Chiwanga, Faraja S, additional, Cieslik, Krzysztof, additional, Comsa, Codruta, additional, Correa Llano, Maria G, additional, Csóka, Monika, additional, Da Gama, Isac V, additional, Davidson, Alan, additional, Potter, Patrick De, additional, Desjardins, Laurence, additional, Dragomir, Monica D, additional, Bruyn, Magritha Du, additional, Kettani, Asmaa El, additional, Elbahi, Amal M, additional, Elgalaly, Dina, additional, Elhaddad, Alaa M, additional, Ali Elhassan, Moawia M, additional, Elzembely, Mahmoud M, additional, Essuman, Vera A, additional, Evina, Ted Grimbert A, additional, Fasina, Oluyemi, additional, Fernández-Teijeiro, Ana, additional, Gandiwa, Moira, additional, Aldana, David García, additional, Geel, Jennifer A, additional, Gizachew, Zelalem, additional, Gregersen, Pernille A, additional, Guedenon, Koffi M, additional, Hadjistilianou, Theodora, additional, Hassan, Sadiq, additional, Hederova, Stanislava, additional, Hessissen, Laila, additional, Hordofa, Diriba F, additional, Hummlen, Marlies, additional, Husakova, Kristina, additional, Ida, Russo, additional, Ilic, Vesna R, additional, Jenkinson, Helen, additional, Amani Kabesha, Theophile B, additional, Kabore, Rolande L, additional, Kalinaki, Abubakar, additional, Kapelushnik, Noa, additional, Kardava, Tamar, additional, Kemilev, Pavlin Kroumov, additional, Kepak, Tomas, additional, Khotenashvili, Zaza, additional, Klett, Artur, additional, Kosh Komba Palet, Jess Elio, additional, Krivaitiene, Dalia, additional, Kruger, Mariana, additional, Kyara, Alice, additional, Lachmann, Eva S, additional, Latinović, Slobodanka, additional, Lecuona, Karin, additional, Lukamba, Robert M, additional, Lumbroso, Livia, additional, Lysytsia, Lesia, additional, Maka, Erika, additional, Makan, Mayuri, additional, Manda, Chatonda, additional, Begue, Nieves Martín, additional, Matende, Ibrahim O, additional, Matua, Marchelo, additional, Mayet, Ismail, additional, Mbumba, Freddy B, additional, Mengesha, Aemero A, additional, Midena, Edoardo, additional, Mndeme, Furahini G, additional, Mohamedani, Ahmed A, additional, Moll, Annette C, additional, Moreira, Claude, additional, Msina, Mchikirwa S, additional, Msukwa, Gerald, additional, Muma, Kangwa I, additional, Murgoi, Gabriela, additional, Musa, Kareem O, additional, Mustak, Hamzah, additional, Muyen, Okwen M, additional, Naidu, Gita, additional, Naumenko, Larisa, additional, Ndoye Roth, Paule Aïda, additional, Neroev, Vladimir, additional, Nikitovic, Marina, additional, Nkanga, Elizabeth D, additional, Nkumbe, Henry, additional, Nyaywa, Mutale, additional, Obono-Obiang, Ghislaine, additional, Oguego, Ngozi C, additional, Olechowski, Andrzej, additional, Oscar, Alexander Hugo, additional, Osei-Bonsu, Peter, additional, Painter, Sally L, additional, Paintsil, Vivian, additional, Paiva, Luisa, additional, Papyan, Ruzanna, additional, Parrozzani, Raffaele, additional, Parulekar, Manoj, additional, Pawinska-Wasikowska, Katarzyna, additional, Perić, Sanja, additional, Philbert, Remezo, additional, Pochop, Pavel, additional, Polyakov, Vladimir G, additional, Pompe, Manca T, additional, Pons, Jonathan J, additional, Raobela, Léa, additional, Renner, Lorna A, additional, Reynders, David, additional, Ribadu, Dahiru, additional, Riheia, Mussagy M, additional, Ritter-Sovinz, Petra, additional, Saakyan, Svetlana, additional, Said, Azza MA, additional, Román Pacheco, Sonsoles San, additional, Scanlan, Trish A, additional, Schoeman, Judy, additional, Seregard, Stefan, additional, Sherief, Sadik T, additional, Cheikh, Sidi Sidi, additional, Silva, Sónia, additional, Sorochynska, Tetyana, additional, Ssali, Grace, additional, Stathopoulos, Christina, additional, Kranjc, Branka Stirn, additional, Stones, David K, additional, Svojgr, Karel, additional, Sylla, Fatoumata, additional, Tamamyan, Gevorg, additional, Tandili, Alketa, additional, Tateshi, Bekim, additional, Theophile, Tuyisabe, additional, Traoré, Fousseyni, additional, Tyau-Tyau, Harba, additional, Umar, Ali B, additional, Urbak, Steen F, additional, Ushakova, Tatiana L, additional, Valeina, Sandra, additional, Hoefen Wijsard, Milo van, additional, Veleva-Krasteva, Nevyana V, additional, Viksnins, Maris, additional, Wackernagel, Werner, additional, Waddell, Keith, additional, Wade, Patricia D, additional, Wali Nigeria, Amina H, additional, Wime, Amelia DC, additional, Dod, Charlotte Wolley, additional, Yanga, Jenny M, additional, Yarovaya, Vera A, additional, Yarovoy, Andrey A, additional, Zein, Ekhtelbenina, additional, Sharabi, Shirley, additional, Zhilyaeva, Katsiaryna, additional, Ziko, Othman AO, additional, and Bowman, Richard, additional

Published
2020
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43. Health-Related Quality of Life in European Childhood Cancer Survivors: Protocol for a Study Within PanCareLIFE (Preprint)

Author

Calaminus, Gabriele, primary, Baust, Katja, additional, Berger, Claire, additional, Byrne, Julianne, additional, Binder, Harald, additional, Casagranda, Leonie, additional, Grabow, Desiree, additional, Grootenhuis, Martha, additional, Kaatsch, Peter, additional, Kaiser, Melanie, additional, Kepak, Tomas, additional, Kepáková, Kateřina, additional, Kremer, Leontien C M, additional, Kruseova, Jarmila, additional, Luks, Ales, additional, Spix, Claudia, additional, van den Berg, Marleen, additional, van den Heuvel-Eibrink, Marry M M, additional, van Dulmen-den Broeder, Eline, additional, Kuonen, Rahel, additional, Sommer, Grit, additional, and Kuehni, Claudia, additional

Published
2020
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44. Fertility education for adolescent cancer patients: Gaps in current clinical practice in Europe

Author

Korte, Elisabeth, primary, Schilling, Ralph, additional, Balcerek, Magdalena, additional, Campbell, Helen, additional, Dirksen, Uta, additional, Herrmann, Gloria, additional, Kepakova, Katerina, additional, Kepak, Tomas, additional, Klco‐Brosius, Stephanie, additional, Kruseova, Jarmila, additional, Kunstreich, Marina, additional, Lackner, Herwig, additional, Langer, Thorsten, additional, Panasiuk, Anna, additional, Stefanowicz, Joanna, additional, Strauß, Gabriele, additional, Ranft, Andreas, additional, Byrne, Julianne, additional, Goldbeck, Lutz, additional, and Borgmann‐Staudt, Anja, additional

Published
2020
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48. Genetic Determinants of Ototoxicity During and After Childhood Cancer Treatment: Protocol for the PanCareLIFE Study

Author

Clemens, Eva, primary, Meijer, Annelot JM, additional, Broer, Linda, additional, Langer, Thorsten, additional, van der Kooi, Anne-Lotte LF, additional, Uitterlinden, André G, additional, de Vries, Andrica, additional, Kuehni, Claudia E, additional, Garrè, Maria L, additional, Kepak, Tomas, additional, Kruseova, Jarmila, additional, Winther, Jeanette F, additional, Kremer, Leontien C, additional, van Dulmen-den Broeder, Eline, additional, Tissing, Wim JE, additional, Rechnitzer, Catherine, additional, Kenborg, Line, additional, Hasle, Henrik, additional, Grabow, Desiree, additional, Parfitt, Ross, additional, Binder, Harald, additional, Carleton, Bruce C, additional, Byrne, Julianne, additional, Kaatsch, Peter, additional, am Zehnhoff-Dinnesen, Antoinette, additional, Zolk, Oliver, additional, and van den Heuvel-Eibrink, Marry M, additional

Published
2019
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49. PanCareLIFE:The scientific basis for a European project to improve long-term care regarding fertility, ototoxicity and health-related quality of life after cancer occurring among children and adolescents

Author

Byrne, Julianne, Grabow, Desiree, Campbell, Helen, O'Brien, Kylie, Bielack, Stefan, Zehnhoff-Dinnesen, Antoinette Am, Calaminus, Gabriele, Kremer, Leontien, Langer, Thorsten, van den Heuvel-Eibrink, Marry M., van Dulmen-den Broeder, Eline, Baust, Katja, Bautz, Andrea, Beck, Jörn D., Berger, Claire, Binder, Harald, Borgmann-Staudt, Anja, Broer, Linda, Cario, Holger, Casagranda, Leonie, Clemens, Eva, Deuster, Dirk, de Vries, Andrica, Dirksen, Uta, Winther, Jeanette Falck, Fossa, Sophie, Font-Gonzalez, Anna, Grandage, Victoria, Haupt, Riccardo, Hecker-Nolting, Stefanie, Hjorth, Lars, Kaiser, Melanie, Kenborg, Line, Kepak, Tomas, Kepakova, Katerina, Knudsen, Lisbeth E., Krawczuk-Rybak, Maryna, Kruseova, Jarmila, Kuehni, Claudia E., Kunstreich, Marina, Kuonen, Rahel, Lackner, Herwig, Leiper, Alison, Loeffen, Erik A. H., Luks, Ales, Modan-Moses, Dalit, Mulder, Renee, Parfitt, Ross, Paul, Norbert W., Ranft, Andreas, Ruud, Ellen, Schilling, Ralph, Spix, Claudia, Stefanowicz, Joanna, Strauss, Gabriele, Uitterlinden, Andre G., van den Berg, Marleen, van der Kooi, Anne-Lotte, van Dijk, Marloes, van Leeuwen, Flora, Zolk, Oliver, Zoeller, Daniela, Kaatsch, Peter, Byrne, Julianne, Grabow, Desiree, Campbell, Helen, O'Brien, Kylie, Bielack, Stefan, Zehnhoff-Dinnesen, Antoinette Am, Calaminus, Gabriele, Kremer, Leontien, Langer, Thorsten, van den Heuvel-Eibrink, Marry M., van Dulmen-den Broeder, Eline, Baust, Katja, Bautz, Andrea, Beck, Jörn D., Berger, Claire, Binder, Harald, Borgmann-Staudt, Anja, Broer, Linda, Cario, Holger, Casagranda, Leonie, Clemens, Eva, Deuster, Dirk, de Vries, Andrica, Dirksen, Uta, Winther, Jeanette Falck, Fossa, Sophie, Font-Gonzalez, Anna, Grandage, Victoria, Haupt, Riccardo, Hecker-Nolting, Stefanie, Hjorth, Lars, Kaiser, Melanie, Kenborg, Line, Kepak, Tomas, Kepakova, Katerina, Knudsen, Lisbeth E., Krawczuk-Rybak, Maryna, Kruseova, Jarmila, Kuehni, Claudia E., Kunstreich, Marina, Kuonen, Rahel, Lackner, Herwig, Leiper, Alison, Loeffen, Erik A. H., Luks, Ales, Modan-Moses, Dalit, Mulder, Renee, Parfitt, Ross, Paul, Norbert W., Ranft, Andreas, Ruud, Ellen, Schilling, Ralph, Spix, Claudia, Stefanowicz, Joanna, Strauss, Gabriele, Uitterlinden, Andre G., van den Berg, Marleen, van der Kooi, Anne-Lotte, van Dijk, Marloes, van Leeuwen, Flora, Zolk, Oliver, Zoeller, Daniela, and Kaatsch, Peter

Published
2018

50. Fertility-Related Wishes and Concerns of Adolescent Cancer Patients and Their Parents.

Author

Korte, Elisabeth, Schilling, Ralph, Balcerek, Magdalena, Byrne, Julianne, Dirksen, Uta, Herrmann, Gloria, Kepak, Tomas, Klco-Brosius, Stephanie, Kruseova, Jarmila, Kunstreich, Marina, Langer, Thorsten, Panasiuk, Anna, Stefanowicz, Joanna, Strauß, Gabriele, Wiegele, Karin, and Borgmann-Staudt, Anja

Subjects
MENTAL health, INFERTILITY, TUMOR diagnosis, TUMOR treatment, RISK factors in infertility, CANCER patient psychology, CANCER relapse, CONFIDENCE intervals, CRYOPRESERVATION of organs, tissues, etc., DECISION making, FEAR, FERTILITY, MEDICAL cooperation, MULTIVARIATE analysis, NONPARAMETRIC statistics, QUESTIONNAIRES, RESEARCH, STATISTICS, LOGISTIC regression analysis, PARENT attitudes, FERTILITY preservation, ODDS ratio, ATTITUDES toward illness
Abstract

Purpose: Within a multicenter European study, we explored fertility-related wishes, concerns, and decision-making of adolescent cancer patients and their parents. Patients and Methods: Patients and parents were each asked to complete a fertility-related questionnaire 3 months after initial diagnosis. In total, 113 of 142 (79.6%) eligible patients participated; 53.1% were male and the median age was 16 years (range 13–20 years). The questionnaire was completed by 111 parents. Univariate analyses were conducted using nonparametric methods with alpha = 5%. For multivariate analyses, binary logistic regression was conducted. Results: Both patients (86.1%) and parents (96.3%) indicated a strong desire for biological parenthood for themselves/their children. Female patients (odds ratio [OR] = 3.70; confidence interval [CI]: 1.43–9.50) and parents (OR = 2.70; CI: 1.21–6.00) were more likely to report a high fear of cancer recurrence. Patients who estimated their risk for fertility impairment being high were more likely to be concerned about their fertility (OR = 5.69; CI: 1.41–22.98). Parents who received fertility preservation information were more likely to recommend its use to their children (OR = 5.50; CI: 1.07–28.40), whereas parents of female patients were less likely to do so (OR = 0.13; CI: 0.03–0.61). Conclusions: The prospect of fertility following cancer treatment is important for adolescent cancer patients and their parents, yet it is associated with many concerns. Counseling regarding fertility preservation can be more effective when the individual needs of patients and their parents are taken into consideration. [ABSTRACT FROM AUTHOR]

Published
2020
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