Using patient-reported outcomes in clinical practice: challenges and opportunities

Lohr, Kathleen N; Zebrack, Bradley

doi:10.1007/s11136-008-9413-7

Cited by 262 publications

(153 citation statements)

References 45 publications

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“…For example, Lohr and Zebrack 303 expressed concern that clinicians may view PROMs as 'short cuts to an appropriately complete and nuanced patient history' and that patients may view PROMs as 'offputting -a lesser substitute for true conversation and sharing'. They also warned that, rather than supporting the patient's agenda, the use of PROMs in the care of individual patients could 'detract from improving outcomes because they divert attention away from problems uppermost on the patient's agenda and toward clinician-centred issues'.…”

Section: Candidate Programme Theories Of Proms Feedbackmentioning

confidence: 99%

“…Some have expressed concerns that when the results of PROMs are used by clinicians to determine access or continued use of treatments or therapies, patients may manipulate their answers to PROMs, which may misrepresent their true feelings but ensure that access to the desired treatment is maintained. For example, Lohr and Zebrack 303 warned that:…”

Section: Candidate Programme Theories Of Proms Feedbackmentioning

confidence: 99%

“…303 Patient-clinician interactions are spaces in which patients present their problems to clinicians and clinicians work with patients to make decisions about care and treatment, but they are also sites for relationship building and managing social interactions. 302,308,321 Therefore, PROMs completion may work in unintended ways to produce unanticipated outcomes, depending on how they fit, or do not fit, with these existing processes.…”

Section: Summary and Structure Of Our Reviewmentioning

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

167

254

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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: Candidate Programme Theories Of Proms Feedbackmentioning

confidence: 99%

Section: Candidate Programme Theories Of Proms Feedbackmentioning

confidence: 99%

Section: Summary and Structure Of Our Reviewmentioning

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

167

254

View full text Add to dashboard Cite

show abstract

“…1). 13 Patients' viewpoints are crucial in understanding refractive error, in promoting uptake of refraction services and in making choice of refractive corrections. 10,11,[14][15][16] Despite the frequency and magnitude of the burden of refractive error, qualitative literature exploring impact of refractive error on QoL from patients' perspectives is sparse.…”

Section: Introductionmentioning

confidence: 99%

Impact of refractive error on quality of life: a qualitative study

Kandel

Khadka

Goggin

et al. 2017

Clinical Exper Ophthalmology

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“…There have been studies demonstrating that differences in race, ethnicity, socioeconomic status, and perceived power differential between health professionals and patients have substantial influences on the patient-reported outcomes (PROs) and affecting the reliability of the PROs being collected (6)(7)(8). In a recent prospective study of 128 patients with chronic inflammatory disease, Jamilloux et al demonstrated that there were statistically significant differences in patients who adhered to 6-month period of responding to e-questionnaires once a month dependent on the patient's characteristics (9).…”

Section: Discussionmentioning

confidence: 99%

Independent predictors of reliability between full time employee-dependent acquisition of functional outcomes compared to non-full time employee-dependent methodologies: a prospective single institutional study

et al. 2016

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Background: The prospective acquisition of reliable patient-reported outcomes (PROs) measures demonstrating the effectiveness of spine surgery, or lack thereof, remains a challenge. The aims of this study are to compare the reliability of functional outcomes metrics obtained using full time employee (FTE) vs.non-FTE-dependent methodologies and to determine the independent predictors of response reliability using non FTE-dependent methodologies Methods: One hundred and nineteen adult patients (male: 65, female: 54) undergoing one-and two-level lumbar fusions at Duke University Medical Center were enrolled in this prospective study. Enrollment criteria included available demographic, clinical and baseline functional outcomes data. All patients were administered two similar sets of baseline questionnaires-(I) phone interviews (FTE-dependent) and (II) hardcopy in clinic (patient self-survey, non-FTE-dependent). All patients had at least a two-week washout period between phone interviews and in-clinic self-surveys to minimize effect of recall. Questionnaires included Oswestry Disability Index (ODI) and Visual Analog Back and Leg Pain Scale (VAS-BP/LP).Reliability was assessed by the degree to which patient responses to baseline questionnaires differed between both time points.Results: About 26.89% had a history an anxiety disorder and 28.57% reported a history of depression. At least 97.47% of patients had a High School Diploma or GED, with 49.57% attaining a 4-year college degree or post-graduate degree. 29.94% reported full-time employment and 14.28% were on disability. There was a very high correlation between baseline PRO's data captured between FTE-dependent compared to non-FTE-dependent methodologies (r=0.89). In a multivariate logistic regression model, the absence of anxiety and depression, higher levels of education (college or greater) and full-time employment, were independently associated with high response reliability using non-FTE-dependent methodologies.Conclusions: Our study suggests that capturing health-related quality of life data using non-FTEdependent methodologies is highly reliable and maybe a more cost-effective alternative. Well-educated patients who are employed full-time appear to be the most reliable.

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Using patient-reported outcomes in clinical practice: challenges and opportunities

Cited by 262 publications

References 45 publications

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

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

Impact of refractive error on quality of life: a qualitative study

Independent predictors of reliability between full time employee-dependent acquisition of functional outcomes compared to non-full time employee-dependent methodologies: a prospective single institutional study

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