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Patient-reported outcomes in end-of-life research in pediatric oncology

Pamela S Hinds1, Jennifer Brandon, Caitlin Allen

  • 1St Jude Children's Research Hospital, Memphis, TN 38105-2719, USA. pam.hinds@stjude.org

Journal of Pediatric Psychology
|April 4, 2007
PubMed

Insights

Few studies focus on patient-reported outcomes (PRO) in pediatric oncology at end of life. Most research in this area does not directly include patient voices, limiting our understanding of their experiences.

Area of Science:

  • Medical research
  • Oncology
  • Palliative care

Background:

  • Pediatric oncology research at end of life is crucial for understanding patient needs.
  • Directly soliciting patient-reported outcomes (PRO) provides valuable insights.
  • Limited data exists on the methods used to capture PRO in this vulnerable population.

Purpose of the Study:

  • To identify and analyze empirical studies on research methods for collecting PRO from pediatric oncology patients nearing end of life.
  • To determine the number and focus of studies employing direct patient input.

Main Methods:

  • A systematic literature search was conducted across five databases (PubMed, Ovid, Cochrane, PsycInfo, CINAHL) from January 2001 to June 2006.
  • Keywords included "pediatric/child," "oncology/cancer," and "end of life/palliative/hospice/dying."
  • A multidisciplinary panel reviewed retrieved English-language publications.

Main Results:

  • Thirty-five publications were identified; 26 met inclusion criteria.
  • Only 15.4% of studies included patient-reported outcomes (PRO).
  • The majority of studies relied on parent reports (23.1%), staff reports (19.2%), or medical record reviews (34.6%).

Conclusions:

  • Empirically-based research on end-of-life care in pediatric oncology is limited.
  • A significant gap exists, with nearly 85% of studies failing to incorporate direct patient-reported outcomes.
  • Future research should prioritize methods for directly capturing the experiences of pediatric oncology patients at end of life.
Abstract

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