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Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population.

Publication ,  Journal Article
Johnston, EE; Rosenberg, AR; Kamal, AH
Published in: J Oncol Pract
October 2017

We must ensure that the 20,000 US children (age 0 to 19 years) who die as a result of serious illness annually receive high-quality end-of-life care. Ensuring high-quality end-of-life care requires recognition that pediatric end-of-life care is conceptually and operationally different than that for adults. For example, in-hospital adult death is considered an outcome to be avoided, whereas many pediatric families may prefer hospital death. Because pediatric deaths are comparatively rare, not all centers offer pediatric-focused palliative care and hospice services. The unique psychosocial issues facing families who are losing a child include challenges for parent decision makers and young siblings. Furthermore, the focus on advance directive documentation in adult care may be less relevant in pediatrics because parental decision makers are available. Health care quality measures provide a framework for tracking the care provided and aid in agency and provider accountability, reimbursement, and educated patient choice for location of care. The National Quality Forum, Joint Commission, and other groups have developed several end-of-life measures. However, none of the current quality measures focus on the unique needs of dying pediatric patients and their caregivers. To evolve the existing infrastructure to better measure and report quality pediatric end-of-life care, we propose two changes. First, we outline how existing adult quality measures may be modified to better address pediatric end-of-life care. Second, we suggest the formation of a pediatric quality measure end-of-life task force. These are the next steps to evolving end-of-life quality measures to better fit the needs of seriously ill children.

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Published In

J Oncol Pract

DOI

EISSN

1935-469X

Publication Date

October 2017

Volume

13

Issue

10

Start / End Page

e874 / e880

Location

United States

Related Subject Headings

  • Young Adult
  • Vulnerable Populations
  • Terminal Care
  • Quality of Health Care
  • Quality Assurance, Health Care
  • Palliative Care
  • Oncology & Carcinogenesis
  • Infant, Newborn
  • Infant
  • Humans
 

Citation

APA
Chicago
ICMJE
MLA
NLM
Johnston, E. E., Rosenberg, A. R., & Kamal, A. H. (2017). Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population. J Oncol Pract, 13(10), e874–e880. https://doi.org/10.1200/JOP.2017.021766
Johnston, Emily E., Abby R. Rosenberg, and Arif H. Kamal. “Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population.J Oncol Pract 13, no. 10 (October 2017): e874–80. https://doi.org/10.1200/JOP.2017.021766.
Johnston EE, Rosenberg AR, Kamal AH. Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population. J Oncol Pract. 2017 Oct;13(10):e874–80.
Johnston, Emily E., et al. “Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population.J Oncol Pract, vol. 13, no. 10, Oct. 2017, pp. e874–80. Pubmed, doi:10.1200/JOP.2017.021766.
Johnston EE, Rosenberg AR, Kamal AH. Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population. J Oncol Pract. 2017 Oct;13(10):e874–e880.

Published In

J Oncol Pract

DOI

EISSN

1935-469X

Publication Date

October 2017

Volume

13

Issue

10

Start / End Page

e874 / e880

Location

United States

Related Subject Headings

  • Young Adult
  • Vulnerable Populations
  • Terminal Care
  • Quality of Health Care
  • Quality Assurance, Health Care
  • Palliative Care
  • Oncology & Carcinogenesis
  • Infant, Newborn
  • Infant
  • Humans