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4. Research Priorities in Pediatric Palliative Care

Author

Baker, Justin N., Levine, Deena R., Hinds, Pamela S., Weaver, Meaghann S., Cunningham, Melody J., Johnson, Liza, Anghelescu, Doralina, Mandrell, Belinda, Gibson, Deborah V., Jones, Barbara, Wolfe, Joanne, Feudtner, Chris, Friebert, Sarah, Carter, Brian, and Kane, Javier R.

Published
2015
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9. Contributors

Author

Adams, Sharon, primary, Alving, Barbara, additional, Anderson, Kenneth C., additional, AuBuchon, James P., additional, Bandarenko, Nicholas, additional, Barrett, Jon, additional, Benjamin, Richard J., additional, Benn, Howard, additional, Beyer, Ginine M., additional, Blajchman, Morris A., additional, Blumberg, Neil, additional, Brecher, Mark E., additional, Broxmeyer, Hal E., additional, Busch, Michael P., additional, Callum, Jeannie L., additional, Campbell-Lee, Sally A., additional, Carson, Jeffrey L., additional, Clark, Kenneth A., additional, Corash, Laurence, additional, Crookes, Robert L., additional, Culler, Elizabeth E., additional, Cunningham, Melody J., additional, Davey, Richard J., additional, Devine, Dana V., additional, Dodd, Roger Y., additional, Duncan, Alexander, additional, Dzik, Walter H., additional, Eckman, James R., additional, Eisenbrey, A. Bradley, additional, Fiebig, Eberhard W., additional, Fisk, John M., additional, Geiger, Terrence L., additional, Goldman, Mindy, additional, Harris, Shealynn B., additional, Heal, Joanna M., additional, Hébert, Paul C., additional, Heddle, Nancy, additional, Hess, John R., additional, Hillyer, Christopher D., additional, Hillyer, Krista L., additional, Holland, Paul V., additional, Janatpour, Kim A., additional, Johnson, Viviana V., additional, Josephson, Cassandra D., additional, Kaufman, Richard M., additional, Kickler, Thomas S., additional, Killion, Diane, additional, King, Karen E., additional, Kleinman, Steven H., additional, Kunicki, Thomas J., additional, Lee, Tzong-Hae, additional, Lipton, Karen Shoos, additional, Lögdberg, Lennart E., additional, Luban, Naomi L.C., additional, Manno, Catherine S., additional, Mantha, Simon, additional, Marincola, Francesco M., additional, McLeod, Bruce C., additional, Menitove, Jay E., additional, Millward, Peter A., additional, Murphy, Edward L., additional, Ness, Paul M., additional, Nugent, Diane J., additional, Perrotta, Peter L., additional, Pisciotto, Patricia T., additional, Price, Thomas H., additional, Ramasethu, Jayashree, additional, Ramirez-Arcos, Sandra M., additional, Reed, William, additional, Reid, Marion E., additional, Roback, John D., additional, Rowley, Scott D., additional, Sandler, S. Gerald, additional, Schuetz, Audrey N., additional, Selogie, Eileen, additional, Shaz, Beth, additional, Shirey, R. Sue, additional, Shulman, Ira A., additional, Shusterman, Suzanne, additional, Silberstein, Leslie E., additional, Sloan, Steven R., additional, Snyder, Edward L., additional, Strauss, Ronald G., additional, Stroncek, David F., additional, Strong, D. Michael, additional, Su, Leon L., additional, Szczepiorkowski, Zbigniew M., additional, Tegtmeier, Gary E., additional, Tinmouth, Alan, additional, Wang, Ena, additional, Webert, Kathryn E., additional, Westhoff, Connie M., additional, Winslow, Robert M., additional, Wong, Edward C.C., additional, Zeger, Gary, additional, and Zimring, James C., additional

Published
2007
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10. Contributors

Author

Adams, David, primary, Adams, Sherri L., additional, Agarwal, Chhavi, additional, Alpern, Elizabeth R., additional, Matheny Antommaria, Armand H., additional, Bair-Merritt, Megan H., additional, Baptista-Neto, Lourival, additional, Baren, Jill, additional, Baum, Carl R., additional, Baum, Eric D., additional, Beasley, Pamela J., additional, Beno, Suzanne, additional, Bernard, Laurie A., additional, Bernstein, Stacey E., additional, Brands, Chad K., additional, Brennan, Laura K., additional, Brett-Fleegler, Marisa B., additional, Butte, Manish J., additional, Byerley, Julie Story, additional, Calello, Diane P., additional, Caplin, Deirdre, additional, Carlisle, Rebecca G., additional, Carlson, Douglas W., additional, Carroll, Jean Marie, additional, Chang, Mary Wu, additional, Cheng, Grace M., additional, Chidekel, Aaron S., additional, Chitkara, Denesh K., additional, Chiu, Bill, additional, Cho, Christine S., additional, Chow, Jeanne S., additional, Cilento, Bartley G., additional, Coffin, Susan E., additional, Cohen, Bernard A., additional, Cole, Kristina A., additional, Conway, Patrick H., additional, Cooper, Maura, additional, Cornell, Timothy, additional, Cronan, Kate M., additional, Cross, Catherine, additional, Cunningham, Bari B., additional, Cunningham, Melody J., additional, Daru, Jennifer A., additional, Davis, Ian J., additional, Deardorff, Matthew A., additional, Degar, Barbara, additional, DelVecchio, Michael, additional, DeMaso, David Ray, additional, Ungria, Marissa de, additional, Dewar, Stephanie B., additional, DeWolfe, Craig C., additional, Dimmers, Martha, additional, Dinulos, James G.H., additional, Donovan, Ed, additional, Dooley, Kenneth J., additional, Doyne, Emmanuel, additional, Duncan, Christine N., additional, Egan, Marie, additional, Eichenfield, Lawrence F., additional, El-hallak, Moussa, additional, Elisofon, Scott A., additional, Eppes, Stephen C., additional, Ewald, Michele Burns, additional, Farah, Mirna M., additional, Feudtner, Chris, additional, Fine, Andrew M., additional, Frangiskakis, Susan Hetzel, additional, Frank, Gary, additional, Frehm, Eric, additional, Frei, Nicole R., additional, Frieden, Ilona J., additional, Friedlaender, Eron Y., additional, Friedman, Jeremy, additional, Fryer, Robert Hugh, additional, Fulton, David R., additional, Galardy, Paul J., additional, Galashan, Mirabai, additional, Gallagher, Mary Pat, additional, Gamulka, Beth D., additional, Gandhi, Rupali, additional, Garza, Mary B., additional, Garzon, Maria C., additional, Geggel, Robert L., additional, Gewitz, Michael H., additional, Gibson, Timothy, additional, Gilliam, Amy E., additional, Ginnis, Katherine B., additional, Goldberg, Amy, additional, Golja, Anna M., additional, Gregory, Melissa J., additional, Harper, April A., additional, Harris, Mary Catherine, additional, Hayes, Natalie, additional, Heeney, Matthew M., additional, Heinzman, Diana M., additional, Heltzer, Meredith Lee, additional, Herzog, Keith D., additional, Hill, Malinda Ann, additional, Hills, Jessica L., additional, Hoberman, Alejandro, additional, Hoehn, K. Sarah, additional, Hoffman, Amber M., additional, Hoffman, Robert J., additional, Holst, Amy P., additional, Homer, Charles J., additional, Honig, Paul J., additional, Hopkins, Patricia M., additional, Hormann, Mark D., additional, Horn, B. David, additional, Isakoff, Michael S., additional, Janeway, Katherine A., additional, Jin, Katherine Ahn, additional, Jonas, Maureen M., additional, Kang, Tammy, additional, Keilty, Krista, additional, Keren, Ron, additional, Kharbanda, Anupam, additional, Kiesau, Marin, additional, Kim, Caroline C., additional, Kim, Jason Y., additional, Kim, Juliann Lipps, additional, Klein, Nicola, additional, Kleinman, Paul K., additional, Korin, Joel B., additional, Kotagal, Uma, additional, Kresnicka, Lisa K., additional, Kronfol, Rana N., additional, Kuelbs, Cynthia L., additional, Kugathasan, Subra, additional, Kurbegov, Amethyst C., additional, Landrigan, Christopher P., additional, Laufer, Miriam, additional, Lauren, Christine, additional, Lebovitz, Daniel J., additional, Leibel, Natasha, additional, Leung, Lucinda P., additional, Levine, Leonard J., additional, Levy, Jason A., additional, Lewis, Phyllis A., additional, Liang, Marilyn G., additional, Licht, Daniel J., additional, Long, Carolyn M., additional, Louie, Jeffrey P., additional, Love, Barry A., additional, Lowery, Patricia V., additional, MacLusky, Ian B., additional, Madejczyk, Katarzyna, additional, Madonna, Mary Beth, additional, Mahant, Sanjay, additional, Manicone, Paul E., additional, Maniscalco, Jennifer, additional, Mann, Keith, additional, Mannix, Rebekah, additional, Mansbach, Jonathan M., additional, Mattei, Peter, additional, Mayer, Oscar H., additional, McBride, Sarah C., additional, McBryde, Kevin D., additional, McKee, Michele R., additional, McNett, William, additional, Melzer, Sanford M., additional, Metjian, Talene A., additional, Metry, Denise W., additional, Muething, Stephen E., additional, Milliken, Emily E., additional, Mirkinson, Laura J., additional, Mittal, Manoj K., additional, Mix, Angela C., additional, Monzack, Debra, additional, Morel, Kimberly D., additional, Moses, Douglas E., additional, Mowad, Eugene M., additional, Mullen, Elizabeth A., additional, Mulliken, John B., additional, Muret-Wagstaff, Sharon, additional, Murphy, Nancy, additional, Nadel, Frances M., additional, Nagler, Joshua, additional, Nard, James A., additional, Neuman, Mark I., additional, Newland, Jason G., additional, Newton, Alice W., additional, Nichol, Peter F., additional, Nigrovic, Lise E., additional, Noel, Richard J., additional, Oberfield, Sharon E., additional, O'Brien, Maureen M., additional, O'Connell, Karen J., additional, Osterhoudt, Kevin C., additional, Ottolini, Mary, additional, Padman, Raj, additional, Padua, Horacio M., additional, Patel, Alka, additional, Pati, Susmita, additional, Percelay, Jack M., additional, Perez-Rossello, Jeannette M., additional, Phelan, Kieran J., additional, Poduri, Annapurna, additional, Poley, J. Rainer, additional, Posner, Jill C., additional, Prahalad, Sampath, additional, Pride, Howard B., additional, Rauch, Daniel, additional, Rawat, David J., additional, Reeves, Scott, additional, Reirden, Daniel H., additional, Roberts, Brandie J., additional, Rodgers, Jack, additional, Romero, José R., additional, Rosen, Paul, additional, Rubin, David M., additional, Sampayo, Esther Maria, additional, Samson-Fang, Lisa, additional, Santucci, Gina, additional, Schaffer, Julie V., additional, Schetzina, Karen E., additional, Schwab, Sandra, additional, Schwarz, Donald F., additional, Scott, Jordan, additional, Selbst, Steven M., additional, Shah, Kara N., additional, Shah, Samir S., additional, Shaikh, Nader, additional, Shannon, Michael W., additional, Sharma, Adhi N., additional, Siberry, George K., additional, Smith, Karen, additional, Smith, Michael J., additional, Somers, Michael J.G., additional, Sondheimer, Neal, additional, Spalding, Steven J., additional, Spandorfer, Philip R., additional, Spergel, Jonathan M., additional, Sperring, Jeffrey L., additional, Spiegel, David A., additional, Srivastava, Rajendu, additional, St. John, Keith H., additional, Stephens, Michael C., additional, Stewart, Christopher C., additional, Stone, Bryan L., additional, Stucky, Erin R., additional, Sundel, Eric R., additional, Sundel, Robert, additional, Swanson, Suzanne, additional, Taylor, Lesli, additional, Thompson, E. Douglas, additional, Traum, Avram Z., additional, Trivedi, Harsh K., additional, Upham, Bryan D., additional, Vandeven, Andrea M., additional, Vaughan, Brigid L., additional, Venditti, Charles P., additional, Villalva, Venus M., additional, Vincent, Robert N., additional, Volchenboum, Samuel, additional, Vossmeyer, Michael T., additional, Wachter, Robert M., additional, Weiner, Daniel J., additional, Weinstein, Michael, additional, Wharff, Elizabeth A., additional, Wilson, Stephen D., additional, Winkelstein, Jerry A., additional, Wolf, Heidi, additional, Woodward, George A., additional, Yan, Albert C., additional, Zackai, Elaine H., additional, Zaenglein, Andrea L., additional, Zaoutis, Theoklis E., additional, and Zipes, David, additional

Published
2007
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12. Relative response of patients with myelodysplastic syndromes and other transfusion-dependent anaemias to deferasirox (ICL670): a 1-yr prospective study

Author

Porter, John, Galanello, Renzo, Saglio, Giuseppe, Neufeld, Ellis J., Vichinsky, Elliott, Cappellini, Maria Domenica, Olivieri, Nancy, Piga, Antonio, Cunningham, Melody J., Soulières, Denis, Gattermann, Norbert, Tchernia, Gilbert, Maertens, Johan, Giardina, Patricia, Kwiatkowski, Janet, Quarta, Giovanni, Jeng, Michael, Forni, Gian Luca, Stadler, Michael, Cario, Holger, Debusscher, Louisette, Della Porta, Matteo, Cazzola, Mario, Greenberg, Peter, Alimena, Giuliana, Rabault, Bertrand, Gathmann, Insa, Ford, John Malcolm, Alberti, Daniele, and Rose, Christian

Published
2008

15. Supplemental_Material - Incorporating Bereaved Parents as Faculty Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care

Author

Snaman, Jennifer M., Kaye, Erica C., Spraker-Perlman, Holly, Levine, Deena, Clark, Lisa, Wilcox, Robin, Barnett, Brittany, Sykes, April, Zhaohua Lu, Cunningham, Melody J., and Baker, Justin N.

Subjects
111099 Nursing not elsewhere classified, 111702 Aged Health Care, FOS: Health sciences
Abstract

Supplemental_Material for Incorporating Bereaved Parents as Faculty Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care by Jennifer M. Snaman, Erica C. Kaye, Holly Spraker-Perlman, Deena Levine, Lisa Clark, Robin Wilcox, Brittany Barnett, April Sykes, Zhaohua Lu, Melody J. Cunningham, and Justin N. Baker in American Journal of Hospice and Palliative Medicine®

Published
2018
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16. Incorporating Bereaved Parents as Faculty Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care

Author

Snaman, Jennifer M., primary, Kaye, Erica C., additional, Spraker-Perlman, Holly, additional, Levine, Deena, additional, Clark, Lisa, additional, Wilcox, Robin, additional, Barnett, Brittany, additional, Sykes, April, additional, Lu, Zhaohua, additional, Cunningham, Melody J., additional, and Baker, Justin N., additional

Published
2018
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25. Hemoglobin H-Constant Spring in North America: A Common Alpha Thalassemia with Frequent Complications.

Author

Singer, Titi, primary, Kim, Hae-Young, primary, Olivieri, Nancy F, primary, Kwiatkowski, Janet, primary, Lal, Ashutosh, primary, Coates, Thomas D., primary, Carson, Susan, primary, Cunningham, Melody J., primary, Giardina, Patricia J, primary, Mueller, Brigitta U, primary, Quinn, Charles, primary, Vichinsky, Elliott, primary, and Network, Thalassemia Clinical Research, primary

Published
2008
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27. Relative response of patients with myelodysplastic syndromes and other transfusion‐dependent anaemias to deferasirox (ICL670): a 1‐yr prospective study

Author

Porter, John, primary, Galanello, Renzo, additional, Saglio, Giuseppe, additional, Neufeld, Ellis J., additional, Vichinsky, Elliott, additional, Cappellini, Maria Domenica, additional, Olivieri, Nancy, additional, Piga, Antonio, additional, Cunningham, Melody J., additional, Soulières, Denis, additional, Gattermann, Norbert, additional, Tchernia, Gilbert, additional, Maertens, Johan, additional, Giardina, Patricia, additional, Kwiatkowski, Janet, additional, Quarta, Giovanni, additional, Jeng, Michael, additional, Forni, Gian Luca, additional, Stadler, Michael, additional, Cario, Holger, additional, Debusscher, Louisette, additional, Porta, Matteo Della, additional, Cazzola, Mario, additional, Greenberg, Peter, additional, Alimena, Giuliana, additional, Rabault, Bertrand, additional, Gathmann, Insa, additional, Ford, John Malcolm, additional, Alberti, Daniele, additional, and Rose, Christian, additional

Published
2007
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29. Screening and counseling for thalassemia

Author

Chui, David H. K., primary, Cunningham, Melody J., additional, Luo, Hong-yuan, additional, Wolfe, Lawrence C., additional, Neufeld, Ellis J., additional, and Steinberg, Martin H., additional

Published
2006
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30. Urinary hepcidin in congenital chronic anemias

Author

Kearney, Susan L., primary, Nemeth, Elizabeta, additional, Neufeld, Ellis J., additional, Thapa, Dharma, additional, Ganz, Tomas, additional, Weinstein, David A., additional, and Cunningham, Melody J., additional

Published
2006
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33. Thalassemia

Author

Cohen, Alan R., primary, Galanello, Renzo, additional, Pennell, Dudley J., additional, Cunningham, Melody J., additional, and Vichinsky, Elliott, additional

Published
2004
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34. Complications of β-thalassemia major in North America

Author

Cunningham, Melody J., Macklin, Eric A., Neufeld, Ellis J., and Cohen, Alan R.

Abstract

Treatment of patients with β-thalassemia major has improved dramatically during the past 40 years; however, the current clinical status of these patients remains poorly characterized. We performed a cross-sectional study of 342 patients in the Registry of the National Institutes of Health-sponsored Thalassemia Clinical Research Network. Evidence of hepatitis C exposure was present in 35% of tested patients, was associated with age, and had a rate of spontaneous viral clearance of 33%. Ferritin levels ranged from 147 to 11 010 ng/mL (median, 1696 ng/mL). Median hepatic iron content was 7.8 mg/g dry weight and 23% of patients had values of 15 mg/g dry weight or higher. No patients 15 years or younger and 5% of patients aged 16 to 24 years had heart disease requiring medication. Ten percent had cirrhosis on biopsy. Endocrinologic complications were common among adults. Seventy-four (22%) patients had recent implantable central venous access devices (CVADs) placed. Among 80 episodes of bacteremia in 38 patients, 90% were attributable to the CVAD. Among 330 patients who had received deferoxamine chelation therapy, 224 (68%) reported no complications. We conclude that hepatitis C, iron-related organ dysfunction, and complications of iron chelation therapy are strongly age-dependent in North American patients with β-thalassemia.

Published
2004
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38. Palliative Care in the Post-Roe Era: A Call to Engagement and Advocacy.

Author

Porter, Amy S., Halix, Sarah J., Frechette, Eleanor M., Stern, Noam, Cunningham, Melody J., Morrow, Jason, and Rosenberg, Abby R.

Subjects
*PALLIATIVE treatment, *ABORTION clinics, *PATIENTS, *HARM (Ethics), *MEDICAL decision making, ROE v. Wade
Abstract

1. Participants will self-report the ability to describe four effects of the Dobbs v. Jackson decision on the field of palliative care, assess the extent of their impact, and summarize why the decision matters in a way that they could communicate to institutional and government leaders. 2. Participants will self-report the ability to facilitate conversation about the effects of the Dobbs decision within their institution and community, implement action to protect patients', families', and clinicians' capacity to consider all routes of care, and network with clinicians in other states to broaden impact. The 2022 Dobbs v. Jackson decision threatens the fundamental tenets and tools of palliative care. We must respond as a field by integrating advocacy into our practice, supporting clinicians under threat, building palliative care capacity and resources, and conducting research on the impact of abortion restrictions. In June 2022, the Supreme Court overturned Roe v. Wade and the right to abortion. This decision threatens the core tenets of palliative care. It sets the precedent for the government to influence medical decision making, superseding clinician capacity to counsel patients and families. This precedent applies not just to abortion but also to other medical technologies and end-of-life care in both pediatrics and adult medicine. In this talk, we begin by acknowledging our belief that abortion is healthcare, that palliative care practitioners hold diverse beliefs and practice preferences, and then set aside personal beliefs to center on our patients and their families. Our primary aim is to discuss how the Dobbs decision impacts the field of palliative care. We use case studies of palliative care clinician-advocates in states with current abortion restrictions alongside emerging state-level and national data to illustrate four key effects of Dobbs on our field: The ruling (1) poses a threat to the foundation of palliative care practice, (2) reveals a critical need for advocacy and research, (3) introduces fear related to physical safety, legal culpability, and moral injury among patients, families, and clinicians, and (4) increases demand for palliative care services (perinatal, pediatric, and adult) because more children with medical complexity will be born. As clinicians who bear witness to the immediate and long-term sequelae of these effects, we assert that we are responsible for advocating for access to appropriate medical care, including all possible routes of care. We then recommend developing national partnerships between states protected from abortion restrictions and states with abortion restrictions to support and protect the field of palliative care in this historic moment. We conclude with a panel of clinician-advocates from states with abortion restrictions including an opportunity for Q&A with participants, holding space for representation of all perspectives. Advocacy / Policy / Regulations Ethical / Legal Aspects of Care [ABSTRACT FROM AUTHOR]

Published
2024
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40. CONTRIBUTORS

Author

Abkowitz, Janis L., Abrams, Charles S., Abrey, Lauren E., Ajioka, Richard S., Alexandrescu, Doru T., Alter, Harvey J., Alvandi, Firoozeh, Araten, David J., Arceci, Robert J., Armstrong, Elina, Bain, Barbara J., Barrett, John, Behringer, Karolin, Bennett, Joel S., Berger, Nathan A., Berliner, Nancy, Beutler, Ernest, Bloomfield, Clara D., Bolton-Maggs, Paula H.B., Bontempo, Franklin A., Bredenfeld, Henning, Brittenham, Gary M., Brown, Kevin E., Brown, Margaret, Burks, Eric J., Bussel, James B., Byrd, John C., Caligiuri, Michael A., Carlson, Katrin M., Carter, Melody C., Cawley, J.C., Cazzola, Mario, Choi, John K., Cines, Douglas B., Cohen, Jeffrey I., Comenzo, Raymond L., Cook, James R., Cooper, Megan A., Crowther, Mark A., Cunningham, Melody J., Dale, David C., Dave, Sandeep S., Leval, Laurence de, Diehl, Volker, Döhner, Hartmut, Döhner, Konstanze, Dokal, Inderjeet, Dunbar, Cynthia E., Dutcher, Janice P., Edelson, Richard, El-Shami, Khaled, Endy, Timothy P., Esteban, Juan I., Estey, Elihu H., Falanga, Anna, Felix, Carolyn A., Ferrara, James L.M., Ferreri, Andrés J.M., Ferri, Clodoveo, Fleisher, Thomas A., Fox, Lindy P., Francis, Charles W., Gaines, Peter, Gallagher, Patrick G., Ganser, Arnold, George, James N., Gewirtz, Alan M., Gewirtz, Amy S., Goldman, John M., Gregg, Xylina T., Grever, Michael R., Hajjar, Katherine A., Harrington, William J., Jr., Harris, Nancy Lee, Heit, John A., Hess, Jay L., Heuser, Michael, Horne, III, McDonald K., Hostetter, Richard B., Hsu, Lewis L., Invernizzi, Rosangela, Jin, David K., Johnson, Carol L., Joyce, Robin M., Kalayanarooj, Siripen, Kaplan, Karen L., Kazura, James W., Keel, Siobán, King, Karen E., King, May-Jean, Klein, Harvey G., Klimm, Beate, Kobbervig, Catie E., Koç, Omer N., Konkle, Barbara A., Kruskall, Margot S., Kushner, James P., Lazarus, Hillard M., Le Beau, Michelle M., Lee, Agnes Y.Y., Levi, Marcel, Lichtin, Alan, Little, Richard F., Liu, Johnson M., Loren, Alison W., LoRusso, Karen L., Loughran, Thomas P., Jr., Luppi, Mario, Luzzatto, Lucio, Ma, Alice D., Maciejewski, Jaroslaw P., Macik, B. Gail, Malech, Harry L., Mattei, Peter, Max, Edward E., McVey, John H., Means, Robert T., Jr., Metcalfe, Dean D., Middeldorp, Saskia, Mikhael, Joseph, Mohandas, Narla, Mrózek, Krzysztof, Myint, Khin Saw Aye, Ness, Paul M., Neufeld, Ellis J., Oliveira, João B., Owen, Roger G., Palmblad, Jan E.W., Parmar, Simrit, Perez, Kimberly, Petersdorf, Effie W., Peterson, LoAnn C., Pileri, Stefano A., Poncz, Mortimer, Powell, Jonathan, Prchal, Josef T., Pui, Ching-Hon, Ragni, Margaret V., Rao, V. Koneti, Reid, Marion E., Remick, Scot C., Remuzzi, Giuseppe, Ribeiro, Raul C., Rick, Margaret E., Rodgers, Griffin P., Rosenblum, Daniel, Rouault, Tracey, Roubey, Robert A.S., Russell-Jones, Robin, Sadler, J. Evan, Saint-Remy, Jean-Marie, Sallah, Sabah, Sassa, Shigeru, Schechter, Geraldine P., Schecter, Alan N., Schieppati, Arrigo, Schnipper, Lowell, Schwartzentruber, Douglas J., Scott, J. Paul, Seligman, Paul A., Siegel, Robert S., Sloand, Elaine M., Spivak, Jerry L., Stabler, Sally P., Stadtmauer, Edward A., Staudt, Louis M., Stetler-Stevenson, Maryalice, Stewart, A. Keith, Straus, Stephen E., Tallman, Martin S., Tefferi, Ayalew, Thompson, Arthur R., Tisdale, John F., Toh, Cheng Hock, Torelli, Giuseppe, Tosato, Giovanna, Tzachanis, Dimitrios, Uhl, Lynne, Valdez, Riccardo, Warkentin, Theodore E., Watanabe, Jill M., Watzke, Herbert H., Wayne, Alan S., Weiss, Mitchell J., Whittaker, Sean, Wiernik, Peter H., Wilson, Wyndham H., Wright, Daniel G., Yanik, Gregory, Yarchoan, Robert, Young, Neal S., Zheng, X. Long, Zieger, Barbara, and Zignego, Anna Linda

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41. Best practices for pediatric palliative cancer care: a primer for clinical providers.

Author

Levine D, Lam CG, Cunningham MJ, Remke S, Chrastek J, Klick J, Macauley R, and Baker JN

Subjects
Adolescent, Child, Ethics, Medical, Health Personnel, Humans, Neoplasms therapy, Palliative Care
Abstract

Cancer is the leading cause of disease-related death in children and adolescents. Pediatric patients with cancer suffer greatly at the end of life. However, palliative care interventions can reduce suffering and significantly improve the care of these patients and their families. A large percentage of pediatric deaths occur outside of the hospital setting where pediatric palliative resources may not be readily available. Patients in the home setting may be cared for by community hospice programs, which are typically staffed for adult populations. Increasingly, nonpediatric providers are asked to provide palliative care for children and adolescents at the end of life, yet they receive little formal training in this area. This review focuses on the principles of best practice in the provision of palliative care for children and adolescents with cancer. Our intent is to aid clinical providers in delivering optimal care to this patient population. Topics unique to pediatric palliative care that are addressed include: providing pain and symptom management in the broad pediatric range from neonate to adolescent; caring for and interacting with developmentally distinct groups; engaging in shared decision making with parents and adolescents; providing accommodations for prognoses that are often more uncertain than in adult patients; and delivering concurrent disease-directed therapy with palliative care.

Published
2013
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42. Complications of beta-thalassemia major in North America.

Author

Cunningham MJ, Macklin EA, Neufeld EJ, and Cohen AR

Subjects
Adolescent, Adult, Age Factors, Child, Child, Preschool, Cross-Sectional Studies, Deferoxamine adverse effects, Endocrine System Diseases epidemiology, Endocrine System Diseases etiology, Ferritins blood, Genotype, Heart Diseases epidemiology, Heart Diseases etiology, Humans, Infant, Iron metabolism, Iron Chelating Agents adverse effects, Iron Chelating Agents therapeutic use, Iron Overload epidemiology, Liver chemistry, Liver pathology, Liver Cirrhosis epidemiology, Liver Cirrhosis etiology, Middle Aged, Retrospective Studies, Transfusion Reaction, beta-Thalassemia blood, beta-Thalassemia epidemiology, beta-Thalassemia therapy, beta-Thalassemia complications
Abstract

Treatment of patients with beta-thalassemia major has improved dramatically during the past 40 years; however, the current clinical status of these patients remains poorly characterized. We performed a cross-sectional study of 342 patients in the Registry of the National Institutes of Health-sponsored Thalassemia Clinical Research Network. Evidence of hepatitis C exposure was present in 35% of tested patients, was associated with age, and had a rate of spontaneous viral clearance of 33%. Ferritin levels ranged from 147 to 11 010 ng/mL (median, 1696 ng/mL). Median hepatic iron content was 7.8 mg/g dry weight and 23% of patients had values of 15 mg/g dry weight or higher. No patients 15 years or younger and 5% of patients aged 16 to 24 years had heart disease requiring medication. Ten percent had cirrhosis on biopsy. Endocrinologic complications were common among adults. Seventy-four (22%) patients had recent implantable central venous access devices (CVADs) placed. Among 80 episodes of bacteremia in 38 patients, 90% were attributable to the CVAD. Among 330 patients who had received deferoxamine chelation therapy, 224 (68%) reported no complications. We conclude that hepatitis C, iron-related organ dysfunction, and complications of iron chelation therapy are strongly age-dependent in North American patients with beta-thalassemia.

Published
2004
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