Handbook_Volume III

614 Bibliografia [1] Ullrich C, Lehmann L, London WB, Guo D, Sridharan M, Koch R, Wolfe J. End-of-life care patterns associated with pediatric palliative care among children who underwent hematopoietic stem cell transplant. Biol Bloood Marrow Transplant 2016;22:10491055. [2] Snaman JM, Talleur AC, Lu J, Levine DR, Kaye EC, Sykes A, Zhaohua L, Triplett B, Baker JN. Treatment intensity and symptoms burden in hospitalized adolescent and young adult hematopoietic cell transplant recipents at the end of life. Bone Marrow Transplant 2018;53(1):84-90. [3] Ullrich C, Rodday AM, Bingen K, Kupst MJ, Patel SK, Syrjala KL, Harris LL, Recklitis CJ, Schwartz L, Davies S, Guinan EC, Chang G, Wolfe J, Parsons SK. Parent outlook: how parents view the road ahead as they embark on hematopoietic stem cell transplantation for their child. Biol Blood Marrow Transplant 2016;22(1):104-11. [4] Levine DR, Van Noy K, Talleur AC, Snyder A, Kaye EC, Baker JN. Thoughts from the threshold: patient and family hopes, fears, values, and goals at the onset of pediatric hematopoietic cell trasnsplantation. Bone Marrow Transplant 2020;55(6):11031113. [5] Ullrich CK, Dussel V, Hilden JM, Sheaffer JW, Lehmann L, Wolfe J. End-of-life experience of hcildren undergoing stem cell transplntation for malignancy: parent and provider perspectives and patterns of care. Blood 2010;115(19):3879-3885. [6] Johnston EE, Muffly L, Alvarez E, Saynina O, Sanders LM, Bhatia S, Chamberlain LJ. End-of-life care intensity in patients undergoing allogenic hematopoietic cell transplantation: a population-level analysis. J Clin Oncol 2018;36(39):3023-3030. [7] Hakanson C, Ohlen J, Kreicbergs U, Cardenas-Turanzas M, Wilson DM, Louka M, Frache S, Giovannetti L, Naylor W, Rhee YJ, Ruiz Ramos R, Teno J, Beernaert K, Deliens L, Houttekier D, Cohen J. Place of death of children with comples chronic condirions: cross-national study of 11 countries. Eur J Pediatr 2017;176:327-335. [8] World Health Organization. Global Atlas of Palliative Care 2020. Available at https://www.thewhpca.org/resources/globalatlas-on-end-of-life-care [9] World Health Organization. Cancer pain relief and palliative care in children. Geneva:WHO;1998 [10] Benini F, Pappadatou D, Bernadà M, Craig F, De Zen L, Downing J, Drake R, Freidrichsdorf S, Garros D, Giacomelli L, Lacerda A, Lazzarin P, Marceglia S, Marston J, Muckaden MA, Papa S, Parravicini E, Pellegatta F, Wolfe J. International standards for pediatric palliative care: from IMPaCCT to GO-PPaCS. J Pain Symptom Manage 2022;63(5):e529-e543. [11] Kaye EC, Snaman JM, Baker JN. Pediatric Palliative Oncology: Bridging Silos of Care Through an Embedded Model. J Clin Oncol.2017;35(24):2740. [12] Kaye EC, Friebert S, Baker JN. Early integration of palliative care for hcildren with high-risk cancer and their families. Pediatr Blood Cancer 2016;63(4):593-7. [13] Weaver MS, Heinze KE, Kelly KP, Wiener L, Casey RL, Bell CJ, Wolfe J, Garee AM, Watson A, Hinds PS. Palliative care as standard of care in pediatric oncology. Pediatr Blood Cancer 2015;62:S829-S833. [14] Ferrell BR, Temel JS, Temin S, Alesi SR, Balboni TA, Basch EM, Firn JJ, Paice, JA, Peppercorn JM, Phillips T, Stovall EL, Zimmermann C, Smith TJ. Integration of palliative care into standard oncology care: American Society of Clinical Oncology Practice Guidelines Update. J Clin Oncol 2017;35(1):96-112. [15] Levine DR, Baker JN, Wolfe J, Lehmann LE, Ullrich C. Strange bedfellows no more: how integrated stem-cell transplantation and palliative care programs care together improve end-of-life care. J Oncol Practice 2017;13(9):569-577. [16] Uber A, Ebelhar JS, Lanzel AF, Roche A, Vidal-Anaya V, Brock KE. Palliatice care in pediatric oncology and hematopoietic stem cell transplantation. Curr Oncol Rep 2022;24:161-174. [17] Lafond DA, Patterson Kelly K, Hinds PS, SIll A, Michael M. Establishing feasibility of early palliative care consultation in pediatric hematopoietic stem cell transplantation.J Ped Oncol Nurs 2015;32(5):265-277. [18] Mahmood LA, Casey D, Dolan JG, Dozier AM, Korones DN. Feasibility of early palliative care consultation in children with high-risk malignancies. Pediatr Blood Cancer 2016;63:1419-1422. [19] Levine DR, Mandrell BN, Sykes A, Pritchard M, Gibson D, Symons HJ, Wendler D, Baker JN. Patients’ and parents needs, attitudes, and perceptions about early palliative care integration in pediatric oncology. JAMA Onncol 2017;3(9):1214-1220. [20] Collins GS, Beaman H, Ho AM, Hermiston ML, Cohen HJ, Dzeng EW. Perceptions of specialty palliative care and its role in pediatric stem cell transplant: a multidisciplinary qualitative study. Pediatr Blood Cancer 2021;e29424 [21] Melenkamp H, Schroder T, Trigoso E, Hutt D, Galimard JE, Kozijn A, Dalissier A, Giergji M, Liptrott S, Kenyon M, Murray J, Corbacioglu S, Bader P on the behalf of the EBMT-Nurses Group and Paediatric Disease Working Party. Specialized pediatric palliative care services in pediatric hematopoietic stem cell tranplsant centers. Children 2021;8:615-626. [22] El-Jawahri A, LeBlanc TW, Burns LJ, Denzen E, Meyer C, Mau L, Roeland EJ, Wood WA, Petersdorf E. What do transplant phsicians think about palliative care? A National Survey Study. Cancer 2018;124(23):4556-4566. [23] Kaye EC, Weaver MS, DeWitt LH, Byers E, Stevens SE, Lukowski J, et al. The Impact of Specialty Palliative Care in Pediatric Oncology A Systematic Review. J Pain Symptom Manage. 2021;61(5):1060-79 e2. [24] Friedrichsdorf SJ, Postier A, Dreyfus J, Osenga K, Sencer S, Wolfe J. Improved quality of life at end of life related to home-based palliative care in children with cancer. J Palliat Med 2015;18:143-150. [25] Legge 22 dicembre 2017, n. 219 “Norme in materia di consenso informato e di disposizioni anticipate di trattamento”. https:// www.gazzettaufficiale.it/eli/gu/2018/01/16/12/sg/pdf [26] Benini F, Vecchi R, Orzalesi M. A charter for the rights of the dying child. Lancet 2014;383(9928):1547-8. [27] Benini F, De Zen L, Pellegatta F. Cure palliative pediatriche. In Libro Italiano di medicina e cure palliative. Poletto Editore 3ed 2019. [28] Legge 15 marzo 2010, n.38. “Disposizioni per garantire l’accesso alle cure palliative e alla terapia del dolore.” https://www. gazzettaufficiale.it/eli/gu/2010/03/19/65/sg/pdf [29] Wolfe J, Orellana L, Ullrich C, Cook EF, Kang TI, Rosenberg A, Geyer R, Feudtner C, Dussel V. Symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST Study. J Clin Oncol 2015;33(17):19381935. [30] Odejide OO, Steensma DP, Patients with heamatological malignancies should not have to choose between transfusions and hospice care. Lancet Heamatol 2020;7:e418-e424. [31] Bergstraesser E, Flury M. Care at the end of life for children with cancer. In Palliative Care in Pediatric Oncology. Springer:Cham, Switzerand 2018;pp 217-244. [32] De Zen L, Marchetti F, Barbi E, Benini F. Off-label drugs use in pediatric palliative care. Italian J Pediatr 2018;44:144. [33] Rudkin GE, Osbome GA, Curtin NJ. Intra-operative patient-controlled sedation. Anesthesia 1991;46:90-92.

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