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

Pamela S. Hinds*, Jennifer Brandon, Caitlin Allen, Nobuko Hijiya, Rachel Newsome, Javier R. Kane

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

32 Scopus citations


Objective: The purpose of this review of published literature was to identify the number and focus of empirically based papers that included research methods used to directly solicit patient-reported outcomes (PRO) from pediatric oncology patients at end of life. Methods: Key terms including "pediatric or child and oncology or cancer and end of life or palliative or hospice or dying" were used with five data bases (PubMed, Ovid, Cochrane, PsycInfo & PsycArticles, and CINAHL) for English language literature published between January, 2001 and June, 2006. All retrieved documents were independently reviewed by a panel of six (nurses, physicians, and one psychologist) with backgrounds in pediatric oncology. Results: Thirty-five publications were identified but nine (25.7%) were eliminated from the analysis as they did not meet inclusion criteria. Of the remaining 26, four (15.4%) included patient-reported outcomes, six (23.1%) included parent only-reported outcomes, and five (19.2%) included staff only-reported outcomes. Nine (34.6%) were retrospective medical record reviews. Two (7.7%) included parent and record review data or parent and physician reports. Conclusions: Empirically-based end-of-life publications in pediatric oncology are relatively few in number and nearly 85% of completed studies do not include PRO.

Original languageEnglish (US)
Pages (from-to)1079-1088
Number of pages10
JournalJournal of pediatric psychology
Issue number9
StatePublished - Oct 2007


  • End of life
  • Literature review
  • Patient-reported outcomes
  • Pediatric oncology

ASJC Scopus subject areas

  • Developmental and Educational Psychology
  • Pediatrics, Perinatology, and Child Health


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