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

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

doi:10.1016/j.jpainsymman.2014.07.010

Cited by 179 publications

(235 citation statements)

References 48 publications

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“…57 There is also one review of qualitative studies 58 and four mixed-method reviews. [59][60][61][62] Thus, there are a total of 21 existing reviews examining the feedback of individual PROMs data in patient care. Of these reviews, one focused on screening for mental health problems 51 in primary and secondary care, and four others focused on the use of PROMs feedback in specialist mental health settings.…”

Section: Existing Evidencementioning

confidence: 99%

“…A number of reviews had already focused on the practical or logistical aspects of PROMs implementation. 59,60 Furthermore, a review has recently been published exploring electronic patient-reported outcomes (ePROs). We decided to focus our review on exploring system strains 1 (individualised vs.…”

Section: How Clinicians Might Use Patient-reported Outcome Measuresmentioning

confidence: 99%

“…59,60 One review focused on feedback of PROMs data to allied health professionals. 61 Three studies attempted to identify the 'barriers and facilitators' to PROMs feedback in clinical practice; 58,59,61 two reviews adopted a theory-driven approach to the review; 60,62 and one review combined a 'review of reviews' with existing conceptual frameworks of PROMs feedback, but focused on synthesising the quantitative evidence. 43 Thus, there is a large volume of literature examining the impact of individual PROMs feedback in clinical practice, and reviewers have dissected and grouped the literature in a number of different ways, for example by condition or by setting.…”

Section: Introduction and Overviewmentioning

confidence: 99%

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Functionality and feedback: a realist synthesis of the collation, interpretation and utilisation of patient-reported outcome measures data to improve patient care

Greenhalgh

Dalkin

Gooding

et al. 2017

Health Serv Deliv Res

177

263

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BackgroundThe feedback of patient-reported outcome measures (PROMs) data is intended to support the care of individual patients and to act as a quality improvement (QI) strategy.ObjectivesTo (1) identify the ideas and assumptions underlying how individual and aggregated PROMs data are intended to improve patient care, and (2) review the evidence to examine the circumstances in which and processes through which PROMs feedback improves patient care.DesignTwo separate but related realist syntheses: (1) feedback of aggregate PROMs and performance data to improve patient care, and (2) feedback of individual PROMs data to improve patient care.InterventionsAggregate – feedback and public reporting of PROMs, patient experience data and performance data to hospital providers and primary care organisations. Individual – feedback of PROMs in oncology, palliative care and the care of people with mental health problems in primary and secondary care settings.Main outcome measuresAggregate – providers’ responses, attitudes and experiences of using PROMs and performance data to improve patient care. Individual – providers’ and patients’ experiences of using PROMs data to raise issues with clinicians, change clinicians’ communication practices, change patient management and improve patient well-being.Data sourcesSearches of electronic databases and forwards and backwards citation tracking.Review methodsRealist synthesis to identify, test and refine programme theories about when, how and why PROMs feedback leads to improvements in patient care.ResultsProviders were more likely to take steps to improve patient care in response to the feedback and public reporting of aggregate PROMs and performance data if they perceived that these data were credible, were aimed at improving patient care, and were timely and provided a clear indication of the source of the problem. However, implementing substantial and sustainable improvement to patient care required system-wide approaches. In the care of individual patients, PROMs function more as a tool to support patients in raising issues with clinicians than they do in substantially changing clinicians’ communication practices with patients. Patients valued both standardised and individualised PROMs as a tool to raise issues, but thought is required as to which patients may benefit and which may not. In settings such as palliative care and psychotherapy, clinicians viewed individualised PROMs as useful to build rapport and support the therapeutic process. PROMs feedback did not substantially shift clinicians’ communication practices or focus discussion on psychosocial issues; this required a shift in clinicians’ perceptions of their remit.Strengths and limitationsThere was a paucity of research examining the feedback of aggregate PROMs data to providers, and we drew on evidence from interventions with similar programme theories (other forms of performance data) to test our theories.ConclusionsPROMs data act as ‘tin openers’ rather than ‘dials’. Providers need more support and guidance on how to collect their own internal data, how to rule out alternative explanations for their outlier status and how to explore the possible causes of their outlier status. There is also tension between PROMs as a QI strategy versus their use in the care of individual patients; PROMs that clinicians find useful in assessing patients, such as individualised measures, are not useful as indicators of service quality.Future workFuture research should (1) explore how differently performing providers have responded to aggregate PROMs feedback, and how organisations have collected PROMs data both for individual patient care and to improve service quality; and (2) explore whether or not and how incorporating PROMs into patients’ electronic records allows multiple different clinicians to receive PROMs feedback, discuss it with patients and act on the data to improve patient care.Study registrationThis study is registered as PROSPERO CRD42013005938.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Section: Existing Evidencementioning

confidence: 99%

Section: How Clinicians Might Use Patient-reported Outcome Measuresmentioning

confidence: 99%

Section: Introduction and Overviewmentioning

confidence: 99%

See 1 more Smart Citation

Functionality and feedback: a realist synthesis of the collation, interpretation and utilisation of patient-reported outcome measures data to improve patient care

Greenhalgh

Dalkin

Gooding

et al. 2017

Health Serv Deliv Res

177

263

View full text Add to dashboard Cite

show abstract

“…Several groups have described their ideas and approaches for, experience and outcomes with, and barriers to developing successful programs that integrate palliative care into routine oncologic care. [17][18][19][20][21][22][23][24][25][26][27][28][29][30][31] …”

Section: Introductionmentioning

confidence: 99%

NCCN Guidelines Insights: Palliative Care, Version 2.2017

Dans¹,

Smith²,

Back³

et al. 2017

J Natl Compr Canc Netw

112

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“…[12][13][14] A recent systematic review found evidence that capture and feedback of patient centred outome measures improves symptom recognition and favourably impacts on care processes. [15] To date there are no published articles on the routine use of PROMS in the SPDC setting. In this article we describe our experience using a combination of both patient and carer rated tools to monitor patient outcomes in our SPDC unit which operates an enhanced therapeutic model.…”

Section: Introductionmentioning

confidence: 99%