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J Pain Symptom Manage. 2015 Mar;49(3):611-24. doi: 10.1016/j.jpainsymman.2014.07.010. Epub 2014 Aug 15.

Capture, transfer, and feedback of patient-centered outcomes data in palliative care populations: does it make a difference? A systematic review.

Author information

1
King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, United Kingdom. Electronic address: simon.etkind@nhs.net.
2
King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, United Kingdom.
3
King's College London, Faculty of Life Sciences and Medicine, London, United Kingdom.
4
Institute of Palliative Care, Oldenburg and Department for Palliative Medicine, University Hospital Munich, Munich, Germany.

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:

The aim was 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, PsycINFO, and gray literature from 1985 to October 2013 for peer-reviewed articles focusing on collection, transfer, and feedback of PCOMs in palliative care populations. Two researchers independently reviewed all included articles. 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 eighty-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 noncancer populations and across a wider range of settings.

KEYWORDS:

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

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