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Advancing Pediatric Palliative Oncology Through Innovation

  • Katharine Brock
  • Melissa Mark
  • Rachel Thienprayoon
  • Christina UllrichEmail author
Chapter
Part of the Pediatric Oncology book series (PEDIATRICO)

Abstract

With burgeoning cancer therapies, many children are living with advanced cancer, with an attendant increase in care complexity and prognostic uncertainty. Now more than ever, there is a great need for meticulous symptom management, effective and compassionate communication, a steadfast focus on the whole child, and continuous attention to the needs of the entire family, irrespective of treatment goals or outcome. Through innovation in research, clinical practice, and education, the holistic practice of palliative care for children with cancer will remain responsive to a changing landscape.

References

  1. Akard TF, Gilmer MJ, Friedman DL, Given B, Hendricks-Ferguson VL, Hinds PS (2013) From qualitative work to intervention development in pediatric oncology palliative care research. J Pediatr Oncol Nurs 30:153–160PubMedPubMedCentralCrossRefGoogle Scholar
  2. Akard TF, Wray S, Gilmer MJ (2015) Facebook advertisements recruit parents of children with cancer for an online survey of web-based research preferences. Cancer Nurs 38:155–161PubMedPubMedCentralCrossRefGoogle Scholar
  3. Alliance WPC, Organization WH (2014) Global atlas of palliative care at the end of life. In: Alliance WPC, ed. i; 19–25Google Scholar
  4. American Academy of Pediatrics (2000) Committee on bioethics and committee on hospital care. Palliative care for children. Pediatrics 106:351–357CrossRefGoogle Scholar
  5. American Academy of Pediatrics Section on Hospice and Palliative Medicine and Committee on Hospital Care (2013) Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics 132:966–972CrossRefGoogle Scholar
  6. American Medical Association (2008) Physician consortium on performance improvement palliative and end of life care physician performance measurement set 2008. (Accessed August 9, 2016, at http://www.amaassn.org/ama/pub/physician-resources/physician-consortiumperformance-improvement/pcpi-measures.page)
  7. Aoun SM, Kristjanson LJ (2005) Challenging the framework for evidence in palliative care research. Palliat Med 19:461–465PubMedCrossRefGoogle Scholar
  8. Back AL, Arnold RM, Baile WF et al (2007) Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Arch Inter Med 167:453–460CrossRefGoogle Scholar
  9. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP (2000) SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist 5:302–311PubMedCrossRefGoogle Scholar
  10. Baker JN, Torkildson C, Baillargeon JG, Olney CA, Kane JR (2007) National survey of pediatric residency program directors and residents regarding education in palliative medicine and end-of-life care. J Palliat Med 10:420–429PubMedCrossRefGoogle Scholar
  11. Baker JN, Windham JA, Hinds PS et al (2013) Bereaved parents’ intentions and suggestions about research autopsies in children with lethal brain tumors. J Pediatr 163:581–586PubMedPubMedCentralCrossRefGoogle Scholar
  12. Baker JN, Levine DR, Hinds PS et al (2015) Research priorities in pediatric palliative care. J Pediatr 167:467–70.e3PubMedPubMedCentralCrossRefGoogle Scholar
  13. Baker HB, McQuilling JP, King NM (2016) Ethical considerations in tissue engineering research: case studies in translation. Methods 99:135–144PubMedCrossRefGoogle Scholar
  14. Baughcum AE, Gerhardt CA, Young-Saleme T, Stefanik R, Klopfenstein KJ (2007) Evaluation of a pediatric palliative care educational workshop for oncology fellows. Pediatr Blood Cancer 49:154–159PubMedCrossRefGoogle Scholar
  15. Bensink ME, Armfield NR, Pinkerton R et al (2009) Using videotelephony to support paediatric oncology-related palliative care in the home: from abandoned RCT to acceptability study. Palliat Med 23:228–237PubMedCrossRefGoogle Scholar
  16. Berde CB, Walco GA, Krane EJ et al (2012) Pediatric analgesic clinical trial designs, measures, and extrapolation: report of an FDA scientific workshop. Pediatrics 129:354–364PubMedCrossRefGoogle Scholar
  17. Boss RD, Hutton N, Donohue PK, Arnold RM (2009) Neonatologist training to guide family decision making for critically ill infants. Arch Pediatr Adolesc Med 163:783–788PubMedPubMedCentralCrossRefGoogle Scholar
  18. Boulet JR, Ben-David MF, Ziv A et al (1998) Using standardized patients to assess the interpersonal skills of physicians. Acad Med: J Assoc Am Med Coll 73:S94–S96CrossRefGoogle Scholar
  19. Bradford N, Herbert A, Walker R et al (2010) Home telemedicine for paediatric palliative care. Stud Health Technol Inform 161:10–19PubMedGoogle Scholar
  20. Bradford NK, Armfield NR, Young J, Herbert A, Mott C, Smith AC (2014a) Principles of a paediatric palliative care consultation can be achieved with home telemedicine. J Telemed Telecare 20:360–364PubMedCrossRefGoogle Scholar
  21. Bradford NK, Armfield NR, Young J, Smith AC (2014b) Paediatric palliative care by video consultation at home: a cost minimisation analysis. BMC Health Serv Res 14:328PubMedPubMedCentralCrossRefGoogle Scholar
  22. Breen M (2006) An evaluation of two subcutaneous infusion devices in children receiving palliative care. Paediat Nurs 18:38–40CrossRefGoogle Scholar
  23. Brock K, Cohen H, Sourkes B et al (2015a) Teaching pediatric fellows palliative care through simulation and video intervention: a practical guide to implementation. MedEdPORTAL, Washington, DCGoogle Scholar
  24. Brock KE, Cohen HJ, Popat RA, Halamek LP (2015b) Reliability and validity of the pediatric palliative care questionnaire for measuring self-efficacy, knowledge, and adequacy of prior medical education among pediatric fellows. J Palliat Med 18:842–848PubMedPubMedCentralCrossRefGoogle Scholar
  25. Brown C, Gephardt G, Lloyd C, Swearingen C, Boateng B (2011) Teaching palliative care skills using simulated family encounters. MedEdPORTAL, Washington, DCGoogle Scholar
  26. Brown CM, Lloyd EC, Swearingen CJ, Boateng BA (2012) Improving resident self-efficacy in pediatric palliative care through clinical simulation. J Palliat Care 28:157–163PubMedGoogle Scholar
  27. Buchanan DR, O’Mara AM, Kelaghan JW, Sgambati M, McCaskill-Stevens W, Minasian L (2007) Challenges and recommendations for advancing the state-of-the-science of quality of life assessment in symptom management trials. Cancer 110:1621–1628PubMedCrossRefGoogle Scholar
  28. Burke BL Jr, Hall RW (2015) Section on telehealth care. Telemedicine: pediatric applications. Pediatrics 136:e293–e308PubMedCrossRefGoogle Scholar
  29. Calhoun AW, Rider EA, Meyer EC, Lamiani G, Truog RD (2009) Assessment of communication skills and self-appraisal in the simulated environment: feasibility of multirater feedback with gap analysis. Simul Healthc 4:22–29PubMedCrossRefGoogle Scholar
  30. Calhoun AW, Rider EA, Peterson E, Meyer EC (2010) Multi-rater feedback with gap analysis: an innovative means to assess communication skill and self-insight. Patient Educ Couns 80:321–326PubMedCrossRefGoogle Scholar
  31. Carter BS, Swan R (2012) Pediatric palliative care instruction for residents: an introduction to IPPC. Am J Hosp Palliat Care 29:375–378PubMedCrossRefGoogle Scholar
  32. Casarett D (2002) ‘Randomize the first patient’: old advice for a new field. AAHPM Bull 2:4–5Google Scholar
  33. Cheng A, Duff J, Grant E, Kissoon N, Grant VJ (2007) Simulation in paediatrics: an educational revolution. Paediatr Child Health 12:465–468PubMedPubMedCentralCrossRefGoogle Scholar
  34. Clinical Trial Launches to Document Efficacy of Animal-Assisted Therapy for Child Cancer Patients and Their Families (2014) (Accessed August 30, 2016, at http://www.americanhumane.org/clinical-trial-launches-documenting-efficacy-of-animal-assisted-therapy.html)
  35. Contro N, Larson J, Scofield S, Sourkes B, Cohen H (2002) Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med 156:14–19PubMedCrossRefGoogle Scholar
  36. Contro NA, Larson J, Scofield S, Sourkes B, Cohen HJ (2004) Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics 114:1248–1252PubMedCrossRefGoogle Scholar
  37. Coombes LH, Wiseman T, Lucas G, Sangha A, Murtagh FE (2016) Health-related quality-of-life outcome measures in paediatric palliative care: a systematic review of psychometric properties and feasibility of use. Palliat Med 30(10):935–949PubMedPubMedCentralCrossRefGoogle Scholar
  38. Downing J, Knapp C, Muckaden MA, Fowler-Kerry S, Marston J (2015) Priorities for global research into children’s palliative care: results of an International Delphi study. BMC Palliat Care 14:36PubMedPubMedCentralCrossRefGoogle Scholar
  39. Dussel V, Kreicbergs U, Hilden JM et al (2009) Looking beyond where children die: determinants and effects of planning a child’s location of death. J Pain Symptom Manag 37:33–43CrossRefGoogle Scholar
  40. Dy SM, Kiley KB, Ast K et al (2015) Measuring what matters: top-ranked quality indicators for hospice and palliative care from the american academy of hospice and palliative medicine and hospice and palliative nurses association. J Pain Symptom Manag 49:773–781CrossRefGoogle Scholar
  41. Dyregrov K (2004) Bereaved parents’ experience of research participation. Soc Sci Med 58:391–400PubMedCrossRefGoogle Scholar
  42. Eilegard A, Steineck G, Nyberg T, Kreicbergs U (2013) Bereaved siblings’ perception of participating in research—a nationwide study. Psycho-Oncology 22:411–416PubMedCrossRefGoogle Scholar
  43. Farquhar MC, Ewing G, Booth S (2011) Using mixed methods to develop and evaluate complex interventions in palliative care research. Palliat Med 25:748–757PubMedCrossRefGoogle Scholar
  44. Farquhar M, Preston N, Evans CJ et al (2013) Mixed methods research in the development and evaluation of complex interventions in palliative and end-of-life care: report on the MORECare consensus exercise. J Palliat Med 16:1550–1560PubMedPubMedCentralCrossRefGoogle Scholar
  45. Feraco AM, Brand SR, Mack JW, Kesselheim JC, Block SD, Wolfe J (2016) Communication skills training in pediatric oncology: moving beyond role modeling. Pediatr Blood Cancer 63(6):966–972PubMedCrossRefGoogle Scholar
  46. Ferrell B, McCaffery M (2014) Knowledge and attitudes survey regarding painGoogle Scholar
  47. File W, Bylund CL, Kesselheim J, Leonard D, Leavey P (2014) Do pediatric hematology/oncology (PHO) fellows receive communication training? Pediatr Blood Cancer 61:502–506PubMedCrossRefGoogle Scholar
  48. Fryer-Edwards K, Arnold RM, Baile W, Tulsky JA, Petracca F, Back A (2006) Reflective teaching practices: an approach to teaching communication skills in a small-group setting. Acad Med 81:638–644PubMedCrossRefGoogle Scholar
  49. Gardner DS, Gerbino S, Walls JW, Chachkes E, Doherty MJ (2015) Mentoring the next generation of social workers in palliative and end-of-life care: the zelda foster studies program. J Soc Work End Life Palliat Care 11:107–131PubMedCrossRefGoogle Scholar
  50. Gelfman LP, Morrison RS (2008) Research funding for palliative medicine. J Palliat Med 11:36–43PubMedCrossRefGoogle Scholar
  51. Gerhardt CA, Grollman JA, Baughcum AE, Young-Saleme T, Stefanik R, Klopfenstein KJ (2009) Longitudinal evaluation of a pediatric palliative care educational workshop for oncology fellows. J Palliat Med 12:323–328PubMedCrossRefGoogle Scholar
  52. Goddard A, Gilmer MJ (2015) The role and impact of animals with pediatric patients. Pediat Nurs 41(2):65–71Google Scholar
  53. Grande GE, Todd CJ (2000) Why are trials in palliative care so difficult? Palliat Med 14:69–74PubMedCrossRefGoogle Scholar
  54. Granek L, Bartels U, Barrera M, Scheinemann K (2015) Challenges faced by pediatric oncology fellows when patients die during their training. J Oncol Pract 11:e182–e189PubMedCrossRefGoogle Scholar
  55. Guyatt GH, Keller JL, Jaeschke R, Rosenbloom D, Adachi JD, Newhouse MT (1990) The n-of-1 randomized controlled trial: clinical usefulness. Our three-year experience. Ann Inter Med 112:293–299CrossRefGoogle Scholar
  56. Hanson LC, Scheunemann LP, Zimmerman S, Rokoske FS, Schenck AP (2010) The PEACE project review of clinical instruments for hospice and palliative care. J Palliat Med 13:1253–1260PubMedCrossRefGoogle Scholar
  57. Harris LL, Placencia FX, Arnold JL, Minard CG, Harris TB, Haidet PM (2015) A structured end-of-life curriculum for neonatal-perinatal postdoctoral fellows. Am J Hosp Palliat Care 32:253–261PubMedCrossRefGoogle Scholar
  58. Haut C, Michael M, Moloney-Harmon P (2012) Implementing a program to improve pediatric and pediatric ICU nurses’ knowledge of and attitudes toward palliative care. J Hosp Palliat Nurs 14:71–79CrossRefGoogle Scholar
  59. Hays RM, Valentine J, Haynes G et al (2006) The seattle pediatric palliative care project: effects on family satisfaction and health-related quality of life. J Palliat Med 9:716–728PubMedCrossRefGoogle Scholar
  60. Higginson IJ, Booth S (2011) The randomized fast-track trial in palliative care: role, utility and ethics in the evaluation of interventions in palliative care? Palliat Med 25:741–747PubMedCrossRefGoogle Scholar
  61. Hinds PS, Pritchard M, Harper J (2004) End-of-life research as a priority for pediatric oncology. J Pediatr Oncol Nurs 21:175–179PubMedCrossRefGoogle Scholar
  62. Hinds PS, Drew D, Oakes LL et al (2005) End-of-life care preferences of pediatric patients with cancer. J Clin Oncol 23:9146–9154PubMedCrossRefGoogle Scholar
  63. Huang IC, Shenkman EA, Madden VL, Vadaparampil S, Quinn G, Knapp CA (2010) Measuring quality of life in pediatric palliative care: challenges and potential solutions. Palliat Med 24:175–182PubMedCrossRefGoogle Scholar
  64. Hui D, Parsons HA, Damani S et al (2011) Quantity, design, and scope of the palliative oncology literature. Oncologist 16:694–703PubMedPubMedCentralCrossRefGoogle Scholar
  65. Hynson JL, Aroni R, Bauld C, Sawyer SM (2006) Research with bereaved parents: a question of how not why. Palliat Med 20:805–811PubMedCrossRefGoogle Scholar
  66. Improving the Quality of Caring (Accessed August 30, 2016 at https://www.pcqn.org/about/)
  67. Institute of Medicine (2001) National research council national cancer policy B. In: Foley KM, Gelband H (eds) Improving palliative care for cancer: summary and recommendations. National Academies, Washington, DC, Copyright 2001 by the National Academy of Sciences. All rights reservedGoogle Scholar
  68. Institute of Medicine (2003) When children die: improving palliative and end-of-life care for children and their families—summary. The National Academies, Washington, DCGoogle Scholar
  69. Institute of Medicine (2014) Dying in America: improving quality and honoring individual preferences near the end of life. The National Academies, Washington, DCGoogle Scholar
  70. Institute of Medicine (US) and National Research Council (US) National Cancer Policy Board (2001) In: Foley KM, Gelband H (eds) Improving palliative care for cancer: summary and recommendations. National Academies, Washington, DCGoogle Scholar
  71. Irwin DE, Varni JW, Yeatts K, DeWalt DA (2009) Cognitive interviewing methodology in the development of a pediatric item bank: a patient reported outcomes measurement information system (PROMIS) study. Health Qual Life Outcomes 7:3PubMedPubMedCentralCrossRefGoogle Scholar
  72. Kaasa S, Hjermstad MJ, Loge JH (2006) Methodological and structural challenges in palliative care research: how have we fared in the last decades? Palliat Med 20:727–734PubMedCrossRefGoogle Scholar
  73. Kassam A, Skiadaresis J, Habib S, Alexander S, Wolfe J (2013) Moving toward quality palliative cancer care: parent and clinician perspectives on gaps between what matters and what is accessible. J Clin Oncol 31:910–915PubMedCrossRefGoogle Scholar
  74. Kersun L, Gyi L, Morrison WE (2009) Training in difficult conversations: a national survey of pediatric hematology-oncology and pediatric critical care physicians. J Palliative Med 12:525–530CrossRefGoogle Scholar
  75. Knapp CA (2009) Research in pediatric palliative care: closing the gap between what is and is not known. Am J Hosp Palliat Care 26:392–398PubMedCrossRefGoogle Scholar
  76. Knapp C, Madden V (2010) Conducting outcomes research in pediatric palliative care. Am J Hosp Palliat Care 27:277–281PubMedCrossRefGoogle Scholar
  77. Kolarik RC, Walker G, Arnold RM (2006) Pediatric resident education in palliative care: a needs assessment. Pediatrics 117:1949–1954PubMedCrossRefGoogle Scholar
  78. Kreicbergs U, Valdimarsdottir U, Steineck G, Henter JI (2004) A population-based nationwide study of parents’ perceptions of a questionnaire on their child’s death due to cancer. Lancet 364:787–789PubMedCrossRefGoogle Scholar
  79. Kumar SP (2011) Reporting of pediatric palliative care: a systematic review and quantitative analysis of research publications in palliative care journals. Indian J Palliat Care 17:202–209PubMedPubMedCentralCrossRefGoogle Scholar
  80. Lazenby M, Ercolano E, Schulman-Green D, McCorkle R (2012) Validity of the end-of-life professional caregiver survey to assess for multidisciplinary educational needs. J Palliat Med 15:427–431PubMedCrossRefGoogle Scholar
  81. Levetown M, American Academy of Pediatrics Committee on B (2008) Communicating with children and families: from everyday interactions to skill in conveying distressing information. Pediatrics 121:e1441–e1460PubMedCrossRefGoogle Scholar
  82. Liben S, Papadatou D, Wolfe J (2008) Paediatric palliative care: challenges and emerging ideas. Lancet 371:852–864PubMedCrossRefGoogle Scholar
  83. Lindsay J (2010) Introducing nursing students to pediatric end-of-life issues using simulation. Dimens Crit Care Nurs 29:175–178PubMedCrossRefGoogle Scholar
  84. Litrivis E, Singh AL, Moonian A, Mahadeo KM (2012) An assessment of end-of-life-care training: should we consider a cross-fellowship, competency-based simulated program? J Pediatr Hematol Oncol 34:488–489PubMedCrossRefGoogle Scholar
  85. Lorenz KA, Rosenfeld K, Wenger N (2007) Quality indicators for palliative and end-of-life care in vulnerable elders. J Am Geriatr Soc 55(Suppl 2):S318–S326PubMedCrossRefGoogle Scholar
  86. Mack JW, Wolfe J (2006) Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis. Curr Opin Pediatr 18:10–14PubMedCrossRefGoogle Scholar
  87. Mack JW, Hilden JM, Watterson J et al (2005) Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 23:9155–9161PubMedCrossRefGoogle Scholar
  88. Madhavan S, Sanders AE, Chou WY et al (2011) Pediatric palliative care and eHealth opportunities for patient-centered care. Am J Prev Med 40:S208–S216PubMedPubMedCentralCrossRefGoogle Scholar
  89. Makoul G (2001) The SEGUE framework for teaching and assessing communication skills. Patient Educ Couns 45:23–34PubMedCrossRefGoogle Scholar
  90. McCabe ME, Hunt EA, Serwint JR (2008) Pediatric residents’ clinical and educational experiences with end-of-life care. Pediatrics 121:e731–e737PubMedCrossRefGoogle Scholar
  91. McLeod LD, Coon CD, Martin SA, Fehnel SE, Hays RD (2011) Interpreting patient-reported outcome results: US FDA guidance and emerging methods. Expert Rev Pharmacoecon Outcomes Res 11:163–169PubMedPubMedCentralCrossRefGoogle Scholar
  92. Meert KL, Eggly S, Pollack M et al (2008) Parents’ perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit. Pediatr Crit Care Med 9:2–7PubMedPubMedCentralCrossRefGoogle Scholar
  93. Michelson KN, Ryan AD, Jovanovic B, Frader J (2009) Pediatric residents’ and fellows’ perspectives on palliative care education. J Palliat Med 12:451–457PubMedPubMedCentralCrossRefGoogle Scholar
  94. Minor CV, Campbell R (2016) The parable of the sower: a case study examining the use of the Godly Play© (R) method as a spiritual intervention on a psychiatric unit of a major children’s hospital. Int J Child Spiritual 21:38–51Google Scholar
  95. Mongeau S, Champagne M, Liben S (2007) Participatory research in pediatric palliative care: benefits and challenges. J Palliat Care 23:5–13PubMedGoogle Scholar
  96. Nakazawa Y, Miyashita M, Morita T, Umeda M, Oyagi Y, Ogasawara T (2009) The palliative care knowledge test: reliability and validity of an instrument to measure palliative care knowledge among health professionals. Palliat Med 23:754–766PubMedCrossRefGoogle Scholar
  97. Nakazawa Y, Miyashita M, Morita T, Umeda M, Oyagi Y, Ogasawara T (2010) The palliative care self-reported practices scale and the palliative care difficulties scale: reliability and validity of two scales evaluating self-reported practices and difficulties experienced in palliative care by health professionals. J Palliat Med 13:427–437PubMedCrossRefGoogle Scholar
  98. National Cancer Control Programmes (2002) Policies and Managerial Guidelines. World Health Organization, GenevaGoogle Scholar
  99. National Consensus Project Guidelines for Quality Palliative Care (2013) Clinical practice guidelines for quality palliative care, 3rd edn. (Accessed August 19, 2015, at http://www.nationalconsensusproject.org)
  100. Nelson H, Mott S, Kleinman ME, Goldstein RD (2015) Parents’ experiences of pediatric palliative transports: a qualitative case series. J Pain Symptom Manag 50:375–380CrossRefGoogle Scholar
  101. Nimmer M, Czachor J, Turner L et al (2016) The benefits and challenges of preconsent in a multisite, pediatric sickle cell intervention trial. Pediatr Blood Cancer 63:1649–1652PubMedCrossRefGoogle Scholar
  102. Orgel E, McCarter R, Jacobs S (2010) A failing medical educational model: a self-assessment by physicians at all levels of training of ability and comfort to deliver bad news. J Palliat Med 13:677–683PubMedCrossRefGoogle Scholar
  103. Peterson EB, Calhoun AW, Rider EA (2014) The reliability of a modified Kalamazoo Consensus statement checklist for assessing the communication skills of multidisciplinary clinicians in the simulated environment. Patient Educ Couns 96:411–418PubMedCrossRefGoogle Scholar
  104. Quinn K, Hudson P, Ashby M, Thomas K (2008) “Palliative care: the essentials”: evaluation of a multidisciplinary education program. J Palliat Med 11:1122–1129PubMedCrossRefGoogle Scholar
  105. Rider EA, Volkan K, Hafler JP (2008) Pediatric residents’ perceptions of communication competencies: implications for teaching. Med Teach 30:e208–ee17PubMedCrossRefGoogle Scholar
  106. Robinson MR, Thiel MM, Shirkey K, Zurakowski D, Meyer EC (2016) Efficacy of training interprofessional spiritual care generalists. J Palliat Med 19(8):814–821PubMedCrossRefGoogle Scholar
  107. Roth M, Wang D, Kim M, Moody K (2009) An assessment of the current state of palliative care education in pediatric hematology/oncology fellowship training. Pediatr Blood Cancer 53:647–651PubMedCrossRefGoogle Scholar
  108. Schenck AP, Rokoske FS, Durham DD, Cagle JG, Hanson LC (2010) The PEACE project: identification of quality measures for hospice and palliative care. J Palliat Med 13:1451–1459PubMedCrossRefGoogle Scholar
  109. Schenck AP, Rokoske FS, Durham D, Cagle JG, Hanson LC (2014) Quality measures for hospice and palliative care: piloting the PEACE measures. J Palliat Med 17:769–775PubMedPubMedCentralCrossRefGoogle Scholar
  110. Schiffman JD, Chamberlain LJ, Palmer L, Contro N, Sourkes B, Sectish TC (2008) Introduction of a pediatric palliative care curriculum for pediatric residents. J Palliat Med 11:164–170PubMedCrossRefGoogle Scholar
  111. Scott DA, Valery PC, Boyle FM, Bain CJ (2002) Does research into sensitive areas do harm? Experiences of research participation after a child’s diagnosis with Ewing’s sarcoma. Med J Aust 177:507–510PubMedGoogle Scholar
  112. Serwint JR, Rutherford LE, Hutton N (2006) Personal and professional experiences of pediatric residents concerning death. J Palliat Med 9:70–81PubMedCrossRefGoogle Scholar
  113. Sheetz MJ, Bowman MA (2008) Pediatric palliative care: an assessment of physicians’ confidence in skills, desire for training, and willingness to refer for end-of-life care. Am J Hosp Palliat Care 25:100–105PubMedCrossRefGoogle Scholar
  114. Singh AL, Klick JC, McCracken CE, Hebbar KB (2016) Evaluating hospice and palliative medicine education in pediatric training programs. Am J Hosp Palliat Care 34(7):603–610PubMedCrossRefGoogle Scholar
  115. Smith TJ, Temin S, Alesi ER et al (2012) American society of clinical oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol 30:880–887PubMedCrossRefGoogle Scholar
  116. Snaman JM, Torres C, Duffy B, Levine DR, Gibson DV, Baker JN (2016a) Parental perspectives of communication at the end of life at a pediatric oncology institution. J Palliat Med 19:326–332PubMedCrossRefGoogle Scholar
  117. Snaman JM, Kaye EC, Levine DR et al (2016b) Pediatric palliative oncology: a new training model for an emerging field. J Clin Oncol 34:288–289PubMedCrossRefGoogle Scholar
  118. Starks H, Doorenbos A, Lindhorst T et al (2016) The family communication study: a randomized trial of prospective pediatric palliative care consultation, study methodology and perceptions of participation burden. Contemp Clin Trials 49:15–20PubMedPubMedCentralCrossRefGoogle Scholar
  119. State telehealth laws and reimbursement policies report 2014 (Accessed August 26, 2016, at http://cchpca.org/sites/default/files/resources/State%20Laws%20and%20Reimbursement%20Policies%20Report%20Feb%20%202015.pdf)
  120. Steele R, Bosma H, Johnston MF et al (2008) Research priorities in pediatric palliative care: a Delphi study. J Palliat Care 24:229–239PubMedGoogle Scholar
  121. Steele R, Cadell S, Siden H, Andrews G, Smit Quosai T, Feichtinger L (2014) Impact of research participation on parents of seriously ill children. J Palliat Med 17:788–796PubMedCrossRefGoogle Scholar
  122. Street RL Jr (1991) Physicians’ communication and parents’ evaluations of pediatric consultations. Med Care 29:1146–1152PubMedCrossRefGoogle Scholar
  123. The PedsQL (2017) Measurement model for the pediatric quality of life inventory, at http://www.pedsql.org/translations.html
  124. Tieman JJ, Sladek RM, Currow DC (2009) Multiple sources: mapping the literature of palliative care. Palliat Med 23:425–431PubMedCrossRefGoogle Scholar
  125. Tobler K, Grant E, Marczinski C (2014) Evaluation of the impact of a simulation-enhanced breaking bad news workshop in pediatrics. Simul Healthc 9:213–219PubMedCrossRefGoogle Scholar
  126. Ullrich C, Morrison RS (2013) Pediatric palliative care research comes of age: what we stand to learn from children with life-threatening illness. J Palliat Med 16:334–336PubMedPubMedCentralCrossRefGoogle Scholar
  127. VanGeest JB (2001) Process evaluation of an educational intervention to improve end-of-life care: the education for physicians on End-of-Life Care (EPEC) program. Am J Hosp Palliat Med 18:233–238CrossRefGoogle Scholar
  128. Walling AM, Asch SM, Lorenz KA et al (2010) The quality of care provided to hospitalized patients at the end of life. Arch Inter Med 170:1057–1063CrossRefGoogle Scholar
  129. Wee B, Hadley G, Derry S (2008) How useful are systematic reviews for informing palliative care practice? Survey of 25 cochrane systematic reviews. BMC Palliat Care 7:13PubMedPubMedCentralCrossRefGoogle Scholar
  130. Williams D, Fisicaro T, Hargraves R, Berg D (2009) End-of-Life communication education program for internal medicine residents. MedEdPORTAL, Washington, DCGoogle Scholar
  131. Wolfe J, Orellana L, Cook EF et al (2014) Improving the care of children with advanced cancer by using an electronic patient-reported feedback intervention: results from the PediQUEST randomized controlled trial. J Clin Oncol 32:1119–1126PubMedPubMedCentralCrossRefGoogle Scholar
  132. Wolfe J, Orellana L, Ullrich C et al (2015) Symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST study. J Clin Oncol 33:1928–1935PubMedPubMedCentralCrossRefGoogle Scholar
  133. Youngblood AQ, Zinkan JL, Tofil NM, White ML (2012) Multidisciplinary simulation in pediatric critical care: the death of a child. Crit Care Nurse 32:55–61PubMedCrossRefGoogle Scholar

Copyright information

© Springer International Publishing AG 2018

Authors and Affiliations

  • Katharine Brock
    • 1
  • Melissa Mark
    • 2
  • Rachel Thienprayoon
    • 2
  • Christina Ullrich
    • 3
    Email author
  1. 1.Aflac Cancer & Blood Disorders Center, Pediatric Palliative Care, Children’s Healthcare of AtlantaEmory UniversityAtlantaUSA
  2. 2.Cincinnati Children’s Hospital Medical CenterCincinnatiUSA
  3. 3.Harvard Medical School, Pediatric Hematology/Oncology and Palliative Care, Boston Children’s Hospital/Dana Farber Cancer InstituteBostonUSA

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