Capture, Transfer, and Feedback of Patient-Centered Outcomes Data in Palliative Care Populations: Does It Make a Difference? A Systematic Review

Simon Noah Etkind*, Barbara A. Daveson, Wingfai Kwok, Jana Witt, Claudia Bausewein, Irene J. Higginson, Fliss E M Murtagh

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

168 Citations (Scopus)
300 Downloads (Pure)

Abstract

Context.
Patient-centered outcome measures (PCOMs) are an important way of promoting patient-professional communication. However, evidence regarding their implementation in palliative care is limited, as is evidence of the impact on care quality and outcomes.

Objectives
To systematically review evidence on capture and feedback of PCOMs in palliative care populations, and determine the effects on processes and outcomes of care.

Methods
We searched Medline, Embase, CINAHL, BNI, PsychINFO and grey literature from 1985 to October 2013 for peer-reviewed papers focusing on collection, transfer and feedback of PCOMs in palliative care populations. Two researchers independently reviewed all included papers. Review articles, feasibility studies, and those not measuring PCOMs in clinical practice were excluded. We quality assessed articles using modified Edwards criteria, and undertook narrative synthesis.

Results
One hundred eight-four articles used 122 different PCOMs in 70,466 patients. Of these, 16 articles corresponding to 13 studies met the full inclusion criteria. Most evidence was from outpatient oncology. There was strong evidence for an impact of PCOMs feedback on processes of care including better symptom recognition, more discussion of quality of life, and increased referrals based on PCOMs reporting. There was evidence of improved emotional and psychological patient outcomes, but no effect on overall quality of life or symptom burden.

Conclusion
In palliative care populations, PCOMs feedback improves awareness of unmet need and allows professionals to act to address patients’ needs. It consequently benefits patients’ emotional and psychological quality of life. However more high quality evidence is needed in non-cancer populations and across a wider range of settings.
Original languageEnglish
Pages (from-to)611-624
Number of pages14
JournalJournal of pain and symptom management
Volume49
Issue number3
Early online date15 Aug 2014
DOIs
Publication statusPublished - Mar 2015

Keywords

  • data collection
  • hospice care
  • Outcome assessment (health care)
  • palliative care
  • quality of life
  • review

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