Patient-reported Outcomes in End-of-Life Research in Pediatric Oncology
Abstract
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.
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A systematic review of empirically based end-of-life publications in pediatrics found that of 26 publications, only four (15.4%) included patient-reported outcomes, six (23.1%) included parent-only-reported outcomes, and five (19.2%) included staff-only-reported outcomes.
“A systematic review of empirically based end of life publications in pediatrics found that of 26 publications, only four (15.4%) included patient-reported outcomes, six (23.1%) included parent only-reported outcomes, and five (19.2%) included staff only-reported outcomes.[23]”
From Palliative Care as a Standard of Care in Pediatric Oncology (2015) · cites this paper as [23]
The review summary (p. 1) reports the stated counts and percentages among 26 eligible publications. Its scope was end-of-life research in pediatric oncology, however, not pediatrics generally as the citing sentence suggests. (LLM, conf=0.88)
Experimental — accuracy not yet measuredProvider discomfort with palliative care conversations and misconceptions that palliative care is only beneficial when treatment is no longer effective are barriers.
“Additional barriers include provider discomfort with palliative care conversations,[2,19,23,38,57] or misconceptions regarding palliative care as only beneficial when treatment is no longer effective[32,58,59] both of which may benefit from clarity in palliative care guidelines.[60]”
From Palliative Care as a Standard of Care in Pediatric Oncology (2015) · cites this paper as [23]
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Palliative Care as a Standard of Care in Pediatric Oncology
Weaver, M. S., Heinze, K. E., Kelly, K. P., Wiener, L., Casey, R. L., Bell, C. J., Wolfe, J., Garee, A. M., Watson, A., & Hinds, P. S. (2015) · Pediatric Blood & Cancer · doi:10.1002/pbc.25695 · Cited by 238 · see citing works
“[8,17,54–56] Additional barriers include provider discomfort with palliative care conversations,[2,19,23,38,57] or misconceptions regarding palliative care as only beneficial when treatment is no longer effective[32,58,59] both of which may benefit from clarity in palliative care guidelines.”
BackgroundSelf-citationWeaver, M. S., Heinze, K. E., Bell, C. J., Wiener, L., Garee, A. M., Kelly, K. P., Casey, R. L., Watson, A., & Hinds, P. S. (2016) · Palliative Medicine · doi:10.1177/0269216315583446 · Cited by 184 · see citing works
Self-citation
- Authors
- Hinds, P. S., Brandon, J., Allen, C., Hijiya, N., Newsome, R., & Kane, J. R.
- Affiliations
- St. Jude Children's Research Hospital (US)
- Venue
- Journal of Pediatric Psychology
- Publisher
- Oxford University Press (OUP)
- Published
- 2007-04-09
- Volume
- 32
- Issue
- 9
- Pages
- 1079-1088
- ISSN
- 0146-8693 (ISSN-L)
- 1465-735X
- OpenAlex
- W2108280900
- Semantic Scholar
- 233b529400839df7a9069c8e35389eb9b3da4692
- Cited by
- 43
- References
- 39
- Citations by year
- 2026: 1 · 2024: 2 · 2023: 2 · 2022: 4 · 2021: 2 · 2020: 2 · 2019: 3 · 2018: 2 · 2017: 4 · 2016: 1 · 2015: 3 · 2014: 1 · 2013: 3 · 2012: 2
- FWCI
- 0.37
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Pediatric Psychology (publishedVersion)
- PubMed (publishedVersion)
- Funders
- National Cancer Institute (R25CA023944)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Keywords
- patient-reported outcomes, pediatric oncology, end-of-life care, palliative care, hospice care, dying children, research methodology, parent-reported outcomes, quality of evidence
- MeSH terms
- Attitude to Death, Attitude to Health, Child, Humans, Neoplasms, Palliative Care, Quality of Life, Hospice Care
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