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3. Enrollment of adolescents and young adults onto SWOG cancer research network clinical trials: A comparative analysis by treatment site and era

Author

Roth, Michael E, Unger, Joseph M, O'Mara, Ann M, Lewis, Mark A, Budd, Troy, Johnson, Rebecca H, Pollock, Brad H, Blanke, Charles, and Freyer, David R

Subjects
Biomedical and Clinical Sciences, Oncology and Carcinogenesis, Cancer, Pediatric, Prevention, Clinical Trials and Supportive Activities, Clinical Research, Adolescent, Adult, Age Factors, Cancer Care Facilities, Clinical Trials as Topic, Community Health Services, Female, Health Services Accessibility, Humans, Male, Medical Oncology, Minority Groups, National Cancer Institute (U.S.), Neoplasms, Patient Selection, United States, Young Adult, adolescent and young adult, cancer, CCOP, clinical trials, enrollment, NCI, NCORP, SWOG, Biochemistry and Cell Biology, Oncology and carcinogenesis
Abstract

BackgroundFew adolescents and young adults (AYAs, 15-39 years old) enroll onto cancer clinical trials, which hinders research otherwise having the potential to improve outcomes in this unique population. Prior studies have reported that AYAs are more likely to receive cancer care in community settings. The National Cancer Institute (NCI) has led efforts to increase trial enrollment through its network of NCI-designated cancer centers (NCICC) combined with community outreach through its Community Clinical Oncology Program (CCOP; replaced by the NCI Community Oncology Research Program in 2014).MethodsUsing AYA proportional enrollment (the proportion of total enrollments who were AYAs) as the primary outcome, we examined enrollment of AYAs onto SWOG therapeutic trials at NCICC, CCOP, and non-NCICC/non-CCOP sites from 2004 to 2013 by type of site, study period (2004-08 vs 2009-13), and patient demographics.ResultsOverall, AYA proportional enrollment was 10.1%. AYA proportional enrollment decreased between 2004-2008 and 2009-2013 (13.1% vs 8.5%, P

Published
2020

5. Access and Models of Care

Author

Ferrari, Andrea, Albritton, Karen, Osborn, Michael, Barr, Ronald, Johnson, Rebecca H., Stark, Dan, Whelan, Jeremy, Reaman, Gregory H., Series editor, Smith, Franklin O., Series editor, Bleyer, Archie, editor, Barr, Ronald, editor, Ries, Lynn, editor, Whelan, Jeremy, editor, and Ferrari, Andrea, editor

Published
2017
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7. Beyond Medical Care: How Different National Models of Care Impact the Experience of Adolescent and Young Adult Cancer Patients.

Author

Patterson, Pandora, Jacobsen, Rebecca L., McDonald, Fiona E.J., Pflugeisen, Chaya M., Bibby, Kit, Macpherson, Catherine Fiona, Thompson, Kate, Murnane, Andrew, Anazodo, Antoinette, Sansom-Daly, Ursula M., Osborn, Michael P., Hayward, Allan, Kok, Cindy, and Johnson, Rebecca H.

Subjects
THERAPEUTICS, SOCIAL support, HEALTH services accessibility, ATTITUDE (Psychology), AGE distribution, MEDICAL care, CANCER patients, EXPERIENCE, SURVEYS, SEX distribution, FERTILITY preservation, COMMUNICATION, CANCER patient medical care
Abstract

Patient experience is positively associated with clinical effectiveness, quality care, and patient safety. This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States, allowing a comparison of patient experiences in the context of different national models of cancer care delivery. Participants (n = 190) were aged 15–29 years and received cancer treatment from 2014 to 2019. Australians (n = 118) were recruited nationally by health care professionals. U.S. participants (n = 72) were recruited nationally via social media. The survey included demographic and disease variables, and questions regarding medical treatment, information and support provision, care coordination, and satisfaction across the treatment pathway. Sensitivity analyses examined the possible contribution of age and gender. Most patients from both countries were satisfied or very satisfied with their medical treatment (chemotherapy, radiotherapy, and surgery). There were significant differences between countries in the provision of fertility preservation services, age-appropriate communication, and psychosocial support. Our findings suggest when a national system of oversight with both state and federal funding is implemented, as is the case in Australia but not in the United States, significantly more AYAs with cancer receive age-appropriate information and support services, and improved access to specialist services such as fertility care. A national approach with government funding and centralized accountability appears to be associated with substantial benefits for the well-being of AYAs undergoing cancer treatment. [ABSTRACT FROM AUTHOR]

Published
2023
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9. Inclusion of a core patient-reported outcomes battery in adolescent and young adult cancer clinical trials

Author

Roth, Michael E, primary, Parsons, Susan K, additional, Ganz, Patricia A, additional, Wagner, Lynne I, additional, Hinds, Pamela S, additional, Alexander, Sarah, additional, Bingen, Kristin, additional, Bober, Sharon L, additional, Brackett, Julienne, additional, Cella, David, additional, Henry, N Lynn, additional, Indelicato, Daniel J, additional, Johnson, Rebecca H, additional, Miller, Tamara P, additional, Rosenberg, Shoshana M, additional, Schmitz, Kathryn H, additional, Thanarajasingam, Gita, additional, Reeve, Bryce B, additional, and Salsman, John M, additional

Published
2022
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15. Access and Models of Care

Author

Ferrari, Andrea, primary, Albritton, Karen, additional, Osborn, Michael, additional, Barr, Ronald, additional, Johnson, Rebecca H., additional, Stark, Dan, additional, and Whelan, Jeremy, additional

Published
2016
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16. Inclusion of a core patient-reported outcomes battery in adolescent and young adult cancer clinical trials.

Author

Roth, Michael E, Parsons, Susan K, Ganz, Patricia A, Wagner, Lynne I, Hinds, Pamela S, Alexander, Sarah, Bingen, Kristin, Bober, Sharon L, Brackett, Julienne, Cella, David, Henry, N Lynn, Indelicato, Daniel J, Johnson, Rebecca H, Miller, Tamara P, Rosenberg, Shoshana M, Schmitz, Kathryn H, Thanarajasingam, Gita, Reeve, Bryce B, and Salsman, John M

Subjects
YOUNG adults, PATIENT reported outcome measures, CANCER patients, CLINICAL trials, QUALITY of life
Abstract

Disparities in care, treatment-related toxicity and health-related quality of life (HRQoL) for adolescents and young adults (AYAs, aged 15-39 years) with cancer are under-addressed partly because of limited collection of patient-reported outcomes (PROs) in cancer clinical trials (CCTs). The AYA years include key developmental milestones distinct from younger and older patients, and cancer interrupts attainment of critical life goals. Lack of consensus on a standardized approach to assess HRQoL and treatment-related toxicity in AYA CCTs has limited the ability to improve patient outcomes. The National Cancer Institute's Clinical Trials Network AYA PRO Task Force was assembled to reach consensus on a core set of PROs and foster its integration into AYA CCTs. Eight key considerations for selecting the core PRO AYA battery components were identified: relevance to AYAs; importance of constructs across the age continuum; prioritization of validated measures; availability of measures without licensing fees; availability in multiple languages; applicability to different cancer types and treatments; ability to measure different HRQoL domains and toxicities; and minimized burden on patients and sites. The Task Force used a modified Delphi approach to identify key components of the PRO battery. The Patient-Reported Outcomes Measurement Information System (PROMIS) and the PRO Common Terminology Criteria for Adverse Events Measurement System met all criteria and were selected to assess HRQoL and treatment toxicity, respectively. Investigators are rapidly incorporating the recommendations of the Task Force into AYA trials. Inclusion of a standardized assessment of HRQoL and treatment toxicities in AYA CCTs is a vital first step to develop interventions to improve health outcomes for AYAs diagnosed with cancer. [ABSTRACT FROM AUTHOR]

Published
2023
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27. Cover Image

Author

Roth, Michael E., primary, Unger, Joseph M., additional, O'Mara, Ann M., additional, Lewis, Mark A., additional, Budd, Troy, additional, Johnson, Rebecca H., additional, Pollock, Brad H., additional, Blanke, Charles, additional, and Freyer, David R., additional

Published
2020
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31. Treatment of young adults with Philadelphia-negative acute lymphoblastic leukemia and lymphoblastic lymphoma: Hyper-CVAD vs. pediatric-inspired regimens

Author

Siegel, Stuart E., primary, Advani, Anjali, additional, Seibel, Nita, additional, Muffly, Lori, additional, Stock, Wendy, additional, Luger, Selina, additional, Shah, Bijal, additional, DeAngelo, Daniel J., additional, Freyer, David R., additional, Douer, Dan, additional, Johnson, Rebecca H., additional, Hayes-Lattin, Brandon, additional, Lewis, Mark, additional, Jaboin, Jerry J., additional, Coccia, Peter F., additional, and Bleyer, Archie, additional

Published
2018
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33. Pediatric-Inspired Treatment Regimens for Adolescents and Young Adults With Philadelphia Chromosome–Negative Acute Lymphoblastic Leukemia

Author

Siegel, Stuart E., primary, Stock, Wendy, additional, Johnson, Rebecca H., additional, Advani, Anjali, additional, Muffly, Lori, additional, Douer, Dan, additional, Reed, Damon, additional, Lewis, Mark, additional, Freyer, David R., additional, Shah, Bijal, additional, Luger, Selina, additional, Hayes-Lattin, Brandon, additional, Jaboin, Jerry J., additional, Coccia, Peter F., additional, DeAngelo, Daniel J., additional, Seibel, Nita, additional, and Bleyer, Archie, additional

Published
2018
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35. Abstracts from the 20th International Symposium on Signal Transduction at the Blood-Brain Barriers

Author

Małecki, Andrzej, primary, Skipor-Lahuta, Janina, additional, Toborek, Michal, additional, Abbott, N. Joan, additional, Antonetti, David A., additional, Su, Enming Joe, additional, Lawrence, Daniel A., additional, Atış, Müge, additional, Akcan, Uğur, additional, Yılmaz, Canan Uğur, additional, Orhan, Nurcan, additional, Düzgün, Poyraz, additional, Ceylan, Umut Deniz, additional, Arıcan, Nadir, additional, Karahüseyinoğlu, Serçin, additional, Şahin, Gizem Nur, additional, Ahıshalı, Bülent, additional, Kaya, Mehmet, additional, Aydin, Sidar, additional, Klopstein, Armelle, additional, Engelhardt, Britta, additional, Baumann, Julia, additional, Tsao, Chih-Chieh, additional, Huang, Sheng-Fu, additional, Ogunshola, Omolara, additional, Boytsova, Elizaveta B., additional, Morgun, Andrey V., additional, Khilazheva, Elena D., additional, Pozhilenkova, Elena A., additional, Gorina, Yana V., additional, Martynova, Galina P., additional, Salmina, Alla B., additional, Bueno, David, additional, Garcia-Fernàndez, Jordi, additional, Castro, Victor, additional, Skowronska, Marta, additional, Chupel, Matheus Uba, additional, Minuzzi, Luciele Guerra, additional, Filaire, Edith, additional, Teixeira, Ana Maria, additional, Corsi, Mariangela, additional, Versele, Romain, additional, Fuso, Andrea, additional, Sevin, Emmanuel, additional, Di Lorenzo, Cherubino, additional, Businaro, Rita, additional, Fenart, Laurence, additional, Gosselet, Fabien, additional, Candela, Pietra, additional, Deli, Mária A., additional, Delaney, Conor, additional, O’Keefe, Eoin, additional, Farrell, Michael, additional, Doyle, Sarah, additional, Campbell, Matthew, additional, Drewes, Lester R., additional, Appelt-Menzel, A., additional, Cubukova, A., additional, Metzger, M., additional, Fischer, R., additional, Francisco, David M. F., additional, Bruggmann, Rémy, additional, Fries, Alexa, additional, Blecharz, Kinga G., additional, Wagner, Josephin, additional, Winkler, Lars, additional, Schneider, Ulf, additional, Vajkoczy, Peter, additional, Furuse, Mikio, additional, Gabbert, Lydia, additional, Dilling, Christina, additional, Sisario, Dmitri, additional, Soukhoroukov, Vladimir, additional, Burek, Malgorzata, additional, Guérit, S., additional, Fidan, E., additional, Devraj, K., additional, Czupalla, C. J., additional, Macas, J., additional, Thom, S., additional, Plate, K. H., additional, Gerhardt, H., additional, Liebner, S., additional, Harazin, András, additional, Bocsik, Alexandra, additional, Váradi, Judit, additional, Fenyvesi, Ferenc, additional, Tubak, Vilmos, additional, Vecsernyés, Miklós, additional, Helms, Hans Christian, additional, Waagepetersen, Helle Sønderby, additional, Nielsen, Carsten Uhd, additional, Brodin, Birger, additional, Hoyk, Zsófia, additional, Tóth, Melinda E., additional, Lénárt, Nikolett, additional, Dukay, Brigitta, additional, Kittel, Ágnes, additional, Vígh, Judit, additional, Veszelka, Szilvia, additional, Walter, Fruzsina, additional, Zvara, Ágnes, additional, Puskás, László, additional, Sántha, Miklós, additional, Engelhardt, Sabrina, additional, Ogunshola, Omolara O., additional, Huber, Anna, additional, Reitner, Alexander, additional, Osmen, Samar, additional, Hahn, Kathrin, additional, Bounzina, Neli, additional, Gerhartl, Anna, additional, Schönegger, Anna, additional, Steinkellner, Hannes, additional, Laccone, Franco, additional, Neuhaus, Winfried, additional, Hudson, Natalie, additional, Celkova, Lucia, additional, Iltzsche, Anne, additional, Drndarski, Svetlana, additional, Begley, David J, additional, Janiurek, Mette Mathiesen, additional, Kucharz, Krzysztof, additional, Christoffersen, Christina, additional, Nielsen, Lars Bo, additional, Lauritzen, Martin, additional, Johnson, Rebecca H, additional, Kho, Dan T, additional, O’Carroll, Simon J, additional, Angel, Catherine E, additional, Graham, E. Scott, additional, Pereira, Jennifer, additional, Karali, Christina Simoglou, additional, Cheng, Vinton, additional, Zarghami, Niloufar, additional, Soto, Manuel Sarmiento, additional, Couch, Yvonne, additional, Anthony, Daniel C., additional, Sibson, Nicola R., additional, Kealy, John, additional, Keep, Richard F., additional, Routhe, Lisa J., additional, Xiang, Jianming, additional, Ye, Hong, additional, Hua, Ya, additional, Moos, Torben, additional, Xi, Guohua, additional, Kristensen, M., additional, Bach, A., additional, Strømgaard, K., additional, Kutuzov, Nikolay, additional, Lopes-Pinheiro, Melissa A., additional, Lim, Jamie, additional, Kamermans, Alwin, additional, van Horssen, Jack, additional, Unger, Wendy W.J., additional, Fontijn, Ruud, additional, de Vries, Helga E., additional, Majerova, Petra, additional, Garruto, Ralph M., additional, Marchetti, Luca, additional, Francisco, David, additional, Gruber, Isabelle, additional, Lyck, Ruth, additional, Mészáros, Mária, additional, Porkoláb, Gergő, additional, Kiss, Lóránd, additional, Pilbat, Ana-Maria, additional, Török, Zsolt, additional, Bozsó, Zsolt, additional, Fülöp, Lívia, additional, Michalicova, Alena, additional, Galba, Jaroslav, additional, Mihaljevic, Sandra, additional, Novak, Michal, additional, Kovac, Andrej, additional, Morofuji, Yoichi, additional, Fujimoto, Takashi, additional, Watanabe, Daisuke, additional, Nakagawa, Shinsuke, additional, Ujifuku, Kenta, additional, Horie, Nobutaka, additional, Izumo, Tsuyoshi, additional, Anda, Takeo, additional, Matsuo, Takayuki, additional, Niu, Fang, additional, Buch, Shilpa, additional, Nyúl-Tóth, Ádám, additional, Kozma, Mihály, additional, Nagyőszi, Péter, additional, Nagy, Krisztina, additional, Fazakas, Csilla, additional, Haskó, János, additional, Molnár, Kinga, additional, Farkas, Attila E., additional, Galajda, Péter, additional, Wilhelm, Imola, additional, Krizbai, István A., additional, Kelly, Eoin, additional, Wallace, Eugene, additional, Greene, Chris, additional, Hughes, Stephanie, additional, Doyle, Niamh, additional, Humphries, Marian M., additional, Grant, Gerald A., additional, Friedman, Alon, additional, Veksler, Ronel, additional, Molloy, Michael G., additional, Meaney, James F., additional, Pender, Niall, additional, Doherty, Colin P., additional, Park, Minseon, additional, Liskiewicz, Arkadiusz, additional, Przybyla, Marta, additional, Kasprowska-Liśkiewicz, Daniela, additional, Nowacka-Chmielewska, Marta, additional, Malecki, Andrzej, additional, Pombero, Ana, additional, Garcia-Lopez, Raquel, additional, Martinez-Morga, Marta, additional, Martinez, Salvador, additional, Prager, Ofer, additional, Solomon-Kamintsky, Lyna, additional, Schoknecht, Karl, additional, Bar-Klein, Guy, additional, Milikovsky, Dan, additional, Vazana, Udi, additional, Rosenbach, Dror, additional, Kovács, Richard, additional, Radak, Zsolt, additional, Rodríguez-Lorenzo, Sabela, additional, Bruggmann, Remy, additional, Kooij, Gijs, additional, de Vries, Helga E, additional, Oxana, Semyachkina-Glushkovskaya, additional, Denis, Bragin, additional, Elena, Vodovozova, additional, Anna, Alekseeva, additional, Alla, Salmina, additional, Vladimir, Salmin, additional, Andrey, Morgun, additional, Nataliya, Malinovskaya, additional, Elena, Khilazheva, additional, Elizaveta, Boytsova, additional, Alexander, Shirokov, additional, Nikita, Navolokin, additional, Alla, Bucharskaya, additional, Yirong, Yang, additional, Arkady, Abdurashitov, additional, Artem, Gekalyuk, additional, Mariya, Ulanova, additional, Anastasia, Shushunova, additional, Madina, Bodrova, additional, Artem, Sagatova, additional, Alexander, Khorovodov, additional, Esmat, Shareef Ali, additional, Valery, Pavlov, additional, Artem, Tuchin, additional, Jürgen, Kurths, additional, de Abreu, Marcelle Silva, additional, Calpena, Ana C., additional, Espina, Marta, additional, García, Maria Luisa, additional, Romero, Ignacio A., additional, Male, David, additional, Storck, Steffen, additional, Hartz, Anika, additional, Pahnke, Jens, additional, Surma, Claus U., additional, Surma, M., additional, Giżejewski, Z., additional, Zieliński, H., additional, Szczepkowska, Aleksandra, additional, Kowalewska, Marta, additional, Krawczynska, Agata, additional, Herman, Andrzej P., additional, Skipor, Janina, additional, Kachappilly, Nicole, additional, Veenstra, Mike, additional, Rivera, Rosiris Leon, additional, Williams, Dionna W., additional, Morgello, Susan, additional, Berman, Joan W., additional, Wyneken, Ursula, additional, Batiz, Luis Federico, additional, Temizyürek, Arzu, additional, Khodadust, Rouhollah, additional, Küçük, Mutlu, additional, Gürses, Candan, additional, Emik, Serkan, additional, Zielińska, Magdalena, additional, Obara-Michlewska, Marta, additional, Milewski, Krzysztof, additional, Skonieczna, Edyta, additional, Fręśko, Inez, additional, Neuwelt, Edward A., additional, Maria, Ana Raquel Santa, additional, Bras, Ana Rita, additional, Lipka, Dóra, additional, Valkai, Sándor, additional, Kincses, András, additional, Dér, András, additional, and Deli, Maria A., additional

Published
2017
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38. Beyond Medical Care: How Different National Models of Care Impact the Experience of Adolescent and Young Adult Cancer Patients

Author

Patterson, Pandora, Jacobsen, Rebecca L., McDonald, Fiona E.J., Pflugeisen, Chaya M., Bibby, Kit, Macpherson, Catherine Fiona, Thompson, Kate, Murnane, Andrew, Anazodo, Antoinette, Sansom-Daly, Ursula M., Osborn, Michael P., Hayward, Allan, Kok, Cindy, and Johnson, Rebecca H.

Abstract

Patient experience is positively associated with clinical effectiveness, quality care, and patient safety. This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States, allowing a comparison of patient experiences in the context of different national models of cancer care delivery. Participants (n= 190) were aged 15–29 years and received cancer treatment from 2014 to 2019. Australians (n= 118) were recruited nationally by health care professionals. U.S. participants (n= 72) were recruited nationally via social media. The survey included demographic and disease variables, and questions regarding medical treatment, information and support provision, care coordination, and satisfaction across the treatment pathway. Sensitivity analyses examined the possible contribution of age and gender. Most patients from both countries were satisfied or very satisfied with their medical treatment (chemotherapy, radiotherapy, and surgery). There were significant differences between countries in the provision of fertility preservation services, age-appropriate communication, and psychosocial support. Our findings suggest when a national system of oversight with both state and federal funding is implemented, as is the case in Australia but not in the United States, significantly more AYAs with cancer receive age-appropriate information and support services, and improved access to specialist services such as fertility care. A national approach with government funding and centralized accountability appears to be associated with substantial benefits for the well-being of AYAs undergoing cancer treatment.

Published
2024
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42. Biosensor Technology Reveals the Disruption of the Endothelial Barrier Function and the Subsequent Death of Blood Brain Barrier Endothelial Cells to Sodium Azide and Its Gaseous Products.

Author

Kho, Dan T., Johnson, Rebecca H., O'Carroll, Simon J., Angel, Catherine E., and Graham, E. Scott

Subjects
BIOSENSORS, SODIUM azide, ENDOTHELIAL cells
Abstract

Herein we demonstrate the sensitive nature of human blood-brain barrier (BBB) endothelial cells to sodium azide and its gaseous product. Sodium azide is known to be acutely cytotoxic at low millimolar concentrations, hence its use as a biological preservative (e.g., in antibodies). Loss of barrier integrity was noticed in experiments using Electric Cell-substrate Impedance Sensing (ECIS) biosensor technology, to measure endothelial barrier integrity continuously in real-time. Initially the effect of sodium azide was observed as an artefact where it was present in antibodies being employed in neutralisation experiments. This was confirmed where antibody clones that were azide-free did not mediate loss of barrier function. A delayed loss of barrier function in neighbouring wells implied the influence of a liberated gaseous product. ECIS technology demonstrated that the BBB endothelial cells had a lower level of direct sensitivity to sodium azide of ~3 μM. Evidence of gaseous toxicity was consistently observed at 30 μM and above, with disrupted barrier function and cell death in neighbouring wells. We highlight the ability of this cellular biosensor technology to reveal both the direct and gaseous toxicity mediated by sodium azide. The sensitivity and temporal dimension of ECIS technology was instrumental in these observations. These findings have substantial implications for the wide use of sodium azide in biological reagents, raising issues of their application in live-cell assays and with regard to the protection of the user. This research also has wider relevance highlighting the sensitivity of brain endothelial cells to a known mitochondrial disruptor. It is logical to hypothesise that BBB endothelial dysfunction due to mitochondrial dys-regulation could have an important but underappreciated role in a range of neurological diseases. [ABSTRACT FROM AUTHOR]

Published
2017
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48. Adolescent and Young Adult Oncology, Version 2.2014

Author

Coccia, Peter F., primary, Pappo, Alberto S., additional, Altman, Jessica, additional, Bhatia, Smita, additional, Borinstein, Scott C., additional, Flynn, Joseph, additional, Frazier, A. Lindsay, additional, George, Suzanne, additional, Goldsby, Robert, additional, Hayashi, Robert, additional, Huang, Mary S., additional, Johnson, Rebecca H., additional, Beaupin, Lynda Kwon, additional, Link, Michael P., additional, Oeffinger, Kevin C., additional, Orr, Kathleen M., additional, Reed, Damon, additional, Spraker, Holly L., additional, Thomas, Deborah A., additional, von Mehren, Margaret, additional, Wechsler, Daniel S., additional, Whelan, Kimberly F., additional, Zebrack, Brad, additional, Shead, Dorothy A., additional, and Sundar, Hema, additional

Published
2014
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