How do patient reported outcome measures (PROMs) support clinician-patient communication and patient care? A realist synthesis
TL;DR: The findings show thatPROMs completion is not a neutral act of information retrieval but can change how patients think about their condition and reveal that the ways in which clinicians use PROMs is shaped by their relationships with patients and professional roles and boundaries.
Abstract: In this paper, we report the findings of a realist synthesis that aimed to understand how and in what circumstances patient reported outcome measures (PROMs) support patient-clinician communication and subsequent care processes and outcomes in clinical care We tested two overarching programme theories: (1) PROMs completion prompts a process of self-reflection and supports patients to raise issues with clinicians and (2) PROMs scores raise clinicians’ awareness of patients’ problems and prompts discussion and action We examined how the structure of the PROM and care context shaped the ways in which PROMs support clinician-patient communication and subsequent care processes PROMs completion prompts patients to reflect on their health and gives them permission to raise issues with clinicians However, clinicians found standardised PROMs completion during patient assessments sometimes constrained rather than supported communication In response, clinicians adapted their use of PROMs to render them compatible with the ongoing management of patient relationships Individualised PROMs supported dialogue by enabling the patient to tell their story In oncology, PROMs completion outside of the consultation enabled clinicians to identify problematic symptoms when the PROM acted as a substitute rather than addition to the clinical encounter and when the PROM focused on symptoms and side effects, rather than health related quality of life (HRQoL) Patients did not always feel it was appropriate to discuss emotional, functional or HRQoL issues with doctors and doctors did not perceive this was within their remit This paper makes two important contributions to the literature First, our findings show that PROMs completion is not a neutral act of information retrieval but can change how patients think about their condition Second, our findings reveal that the ways in which clinicians use PROMs is shaped by their relationships with patients and professional roles and boundaries Future research should examine how PROMs completion and feedback shapes and is influenced by the process of building relationships with patients, rather than just their impact on information exchange and decision making
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TL;DR: In reality, the road to a marketed drug is often far from the frequently depicted linear path, so extracting practical insights and lessons from such experiences by discussing drug discovery 'Case histories' is the aim of an inaugural forum this month.
Abstract: In reality, the road to a marketed drug is often far from the frequently depicted linear path. Extracting practical insights and lessons from such experiences by discussing drug discovery 'Case histories' is the aim of an inaugural forum this month.
243 citations
TL;DR: In cross-study comparisons, barriers to PROM/PREM implementation were consistent across patient populations and care settings, but enablers were context specific, suggesting the need for tailored implementation strategies based on clinic resources.
Abstract: Patient-reported outcome and experience measures (PROMs/PREMs) are well established in research for many health conditions, but barriers persist for implementing them in routine care. Implementation science (IS) offers a potential way forward, but its application has been limited for PROMs/PREMs. We compare similarities and differences for widely used IS frameworks and their applicability for implementing PROMs/PREMs through case studies. Three case studies implemented PROMs: (1) pain clinics in Canada; (2) oncology clinics in Australia; and (3) pediatric/adult clinics for chronic conditions in the Netherlands. The fourth case study is planning PREMs implementation in Canadian primary care clinics. We compare case studies on barriers, enablers, implementation strategies, and evaluation. Case studies used IS frameworks to systematize barriers, to develop implementation strategies for clinics, and to evaluate implementation effectiveness. Across case studies, consistent PROM/PREM implementation barriers were technology, uncertainty about how or why to use PROMs/PREMs, and competing demands from established clinical workflows. Enabling factors in clinics were context specific. Implementation support strategies changed during pre-implementation, implementation, and post-implementation stages. Evaluation approaches were inconsistent across case studies, and thus, we present example evaluation metrics specific to PROMs/PREMs. Multilevel IS frameworks are necessary for PROM/PREM implementation given the complexity. In cross-study comparisons, barriers to PROM/PREM implementation were consistent across patient populations and care settings, but enablers were context specific, suggesting the need for tailored implementation strategies based on clinic resources. Theoretically guided studies are needed to clarify how, why, and in what circumstances IS principles lead to successful PROM/PREM integration and sustainability.
107 citations
University of Bologna1, University of Pisa2, Soochow University (Suzhou)3, Cornell University4, Aarhus University5, Yale University6, Center for Drug Evaluation and Research7, University of La Laguna8, University of Kentucky9, Semmelweis University10, Universidade Federal do Rio Grande do Sul11, Kyoto University12, Temple University13, Harvard University14, Capital Medical University15, George Washington University16, Johns Hopkins University School of Medicine17, University of Padua18, State University of New York System19
TL;DR: In this article, the authors outline the major limitations of the psychometric model and provide criteria for clinimetric patient-reported outcome measures (CLIPROMs), with particular reference to the differences between clini-metric and psychometric approaches.
Abstract: Patient-reported outcome measures (PROMs) are self-rated scales and indices developed to improve the detection of the patients' subjective experience. Given that a considerable number of PROMs are available, it is important to evaluate their validity and usefulness in a specific research or clinical setting. Published guidelines, based on psychometric criteria, do not fit in with the complexity of clinical challenges, because of their quest for homogeneity of components and inadequate attention to sensitivity. Psychometric theory has stifled the field and led to the routine use of scales widely accepted yet with a history of poor performance. Clinimetrics, the science of clinical measurements, may provide a more suitable conceptual and methodological framework. The aims of this paper are to outline the major limitations of the psychometric model and to provide criteria for clinimetric patient-reported outcome measures (CLIPROMs). The characteristics related to reliability, sensitivity, validity, and clinical utility of instruments are critically reviewed, with particular reference to the differences between clinimetric and psychometric approaches. Of note is the fact that PROMs, rating scales, and indices developed according to psychometric criteria may display relevant clinimetric properties. The present paper underpins the importance of the clini-metric methodology in choosing the appropriate PROMs. CLIPROM criteria may also guide the development of new indices and the validation of existing PROMs to be employed in clinical settings.
70 citations
Journal Article•
TL;DR: In this paper, the authors present a realist synthesis of the evidence to understand by what means and in what circumstances the feedback of PROMs data leads to the intended service improvements.
Abstract: Introduction The feedback and public reporting of PROMs data aims to improve the quality of care provided to patients. Existing systematic reviews have found it difficult to draw overall conclusions about the effectiveness of PROMs feedback. We aim to execute a realist synthesis of the evidence to understand by what means and in what circumstances the feedback of PROMs data leads to the intended service improvements. Methods and analysis Realist synthesis involves (stage 1) identifying the ideas, assumptions or ‘programme theories’ which explain how PROMs feedback is supposed to work and in what circumstances and then (stage 2) reviewing the evidence to determine the extent to which these expectations are met in practice. For stage 1, six provisional ‘functions’ of PROMs feedback have been identified to structure our review (screening, monitoring, patient involvement, demand management, quality improvement and patient choice). For each function, we will identify the different programme theories that underlie these different goals and develop a logical map of the respective implementation processes. In stage 2, we will identify studies that will provide empirical tests of each component of the programme theories to evaluate the circumstances in which the potential obstacles can be overcome and whether and how the unintended consequences of PROMs feedback arise. We will synthesise this evidence to (1) identify the implementation processes which support or constrain the successful collation, interpretation and utilisation of PROMs data; (2) identify the implementation processes through which the unintended consequences of PROMs data arise and those where they can be avoided. Ethics and dissemination The study will not require NHS ethics approval. We have secured ethical approval for the study from the University of Leeds (LTSSP-019). We will disseminate the findings of the review through a briefing paper and dissemination event for National Health Service stakeholders, conferences and peer reviewed publications.
47 citations
References
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TL;DR: The Cochrane Collaboration’s tool for assessing risk of bias aims to make the process clearer and more accurate.
Abstract: Flaws in the design, conduct, analysis, and reporting of randomised trials can cause the effect of an intervention to be underestimated or overestimated. The Cochrane Collaboration’s tool for assessing risk of bias aims to make the process clearer and more accurate
22,227 citations
"How do patient reported outcome mea..." refers methods in this paper
...The rigour of randomised controlled trials were assessed using the Cochrane risk of bias tool [38]....
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TL;DR: Analyzing health care organizations as complex systems, Crossing the Quality Chasm also documents the causes of the quality gap, identifies current practices that impede quality care, and explores how systems approaches can be used to implement change.
Abstract: Crossing the Quality Chasm identifies and recommends improvements in six dimensions of health care in the U.S.: patient safety, care effectiveness, patient-centeredness, timeliness, care efficiency, and equity. Safety looks at reducing the likelihood that patients are harmed by medical errors. Effectiveness describes avoiding over and underuse of resources and services. Patient-centeredness relates both to customer service and to considering and accommodating individual patient needs when making care decisions. Timeliness emphasizes reducing wait times. Efficiency focuses on reducing waste and, as a result, total cost of care. Equity looks at closing racial and income gaps in health care.
15,046 citations
TL;DR: It is argued that there is no substitute for systematic and thorough application of the principles of qualitative research and technical fixes will achieve little unless they are embedded in a broader understanding of the rationale and assumptions behind qualitative research.
Abstract: Qualitative research methods are enjoying unprecedented popularity. Although checklists have undoubtedly contributed to the wider acceptance of such methods, these can be counterproductive if used prescriptively. The uncritical adoption of a range of “technical fixes” (such as purposive sampling, grounded theory, multiple coding, triangulation, and respondent validation) does not, in itself, confer rigour.
In this article I discuss the limitations of these procedures and argue that there is no substitute for systematic and thorough application of the principles of qualitative research. Technical fixes will achieve little unless they are embedded in a broader understanding of the rationale and assumptions behind qualitative research.
#### Summary points
Checklists can be useful improving qualitative research methods, but overzealous and uncritical use can be counterproductive
Reducing qualitative research to a list of technical procedures (such as purposive sampling, grounded theory, multiple coding, triangulation, and respondent validation) is overly prescriptive and results in “the tail wagging the dog”
None of these “technical fixes” in itself confers rigour; they can strengthen the rigour of qualitative research only if embedded in a broader understanding of qualitative research design and data analysis
Otherwise we risk compromising the unique contribution that systematic qualitative research can make to health services research
In medical research the question is no longer whether qualitative methods are valuable but how rigour can be ensured or enhanced. Checklists have played an important role in conferring respectability on qualitative research and in convincing potential sceptics of its thoroughness.1–3 They have equipped those unfamiliar with this approach to evaluate or review qualitative work (by providing guidance on crucial questions that need to be asked) and in reminding qualitative researchers of the need for a systematic approach (by providing an aide-memoire of the various stages involved in research design and data analysis4).
Qualitative researchers stress the …
2,660 citations
TL;DR: Clinicians and patients should maximize the therapeutic effects of communication by explicitly orienting communication to achieve intermediate outcomes associated with improved health.
1,780 citations
"How do patient reported outcome mea..." refers background in this paper
...Context The programme theories above largely focus on mechanisms and some draw on models that elucidate the pathways through which communication is anticipated to influence patient care and outcomes [62, 63]....
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