Dataset Information

Patient-relevant outcomes: what are we talking about? A scoping review to improve conceptual clarity.

ABSTRACT:

Background

With respect to patient-centered care, measuring care effects based on patient-relevant outcomes is becoming increasingly important. There is some uncertainty about what outcomes are particularly relevant to patients and who determines their relevance. To determine this, we conducted a scoping review of the international literature with the aim to improve the conceptual clarity regarding (1) the terminology used for supposedly patient-relevant outcomes, (2) the variety of outcomes considered patient-relevant, and (3) justifications for the choice of these specific outcomes.

Methods

We conducted a systematic search in Embase, PubMed (including Medline), Cochrane Central, Scopus, and Google Scholar with a special focus on article titles. Search terms included patient-relevant, patient-important, patient-preferred, and outcome(s), endpoint(s), parameter(s), indicator(s). We limited the search period from January 2000 to July 2019. Full-text articles reporting outcomes that were described as patient-relevant met the inclusion criteria. Two researchers independently analyzed all eligible articles applying quantitative and structuring content analysis.

Results

We identified 155 articles, 44 of which met the inclusion criteria. A content analysis revealed 35 different terms used with regard to patient-relevant outcomes. However, authors predominantly referred to patient-important outcomes (23 articles, 52.3%) and patient-relevant outcomes (17 articles, 38.6%). A structuring content analysis of all extracted outcomes revealed a total of 281 codes, pooled in 32 inductive categories. Among these, the following categories dominated: symptoms, adverse events/complications, survival/mortality, pain. In just 16 of the articles (36.4%), authors provided justifications for the choice of the outcome being based either on patient and/or expert opinions. In another 13 articles (29.5%), no justification was provided.

Conclusion

This scoping review on patient-relevant outcomes was driven by the questions (1) what outcomes are particularly relevant to patients, and (2) who determines their relevance. We found a wide range of supposedly patient-relevant outcomes, with only one third of articles involving patients in the justification of the outcome selection. In view of this conceptual uncertainty it appears difficult to determine or even to compare a particular patient benefit of interventions. A set of generic outcomes relevant to patients would be helpful to contribute to a consistent understanding of patient relevance.

SUBMITTER: Kersting C

PROVIDER: S-EPMC7325243 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature

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Patient-relevant outcomes: what are we talking about? A scoping review to improve conceptual clarity.

Kersting Christine C Kneer Malte M Barzel Anne A

BMC health services research 20200629 1

<h4>Background</h4>With respect to patient-centered care, measuring care effects based on patient-relevant outcomes is becoming increasingly important. There is some uncertainty about what outcomes are particularly relevant to patients and who determines their relevance. To determine this, we conducted a scoping review of the international literature with the aim to improve the conceptual clarity regarding (1) the terminology used for supposedly patient-relevant outcomes, (2) the variety of outc ...[more]

PMID: 32600321

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Project description:IntroductionDischarging older adults with frailty home from the emergency department (ED) poses unique challenges due to multiple interacting physical and social problems. Paramedic supportive discharge services help overcome these challenges by adding in-home assessment and/or interventions. Our objective is to describe existing paramedic programmes designed to support discharge from the ED or hospital to avoid unnecessary hospital admissions. A comprehensive description of paramedic supportive discharge services will be conducted by mapping the literature to describe: (1) why such programmes are needed; (2) who is being targeted, making referrals and delivering the services and (3) what assessments and interventions are offered.Methods and analysisWe will include studies that focus on expanded paramedic roles (community paramedicine) and extended scope postdischarge from the ED or hospital. All study designs will be included with no limit by language. We will include peer-reviewed articles and preprints and a targeted search of grey literature from January 2000 to June 2022. The proposed scoping review will be conducted in accordance with the Joanna Briggs Institute methodology. We will use a search strategy designed by a health science librarian to search MEDLINE All (Ovid), CINAHL Full Text (EBSCO), Embase (Elsevier) and Scopus (Elsevier) for eligible studies from 2000 to present. Two independent reviewers will conduct screening and full-text review. Data extraction will be conducted by one reviewer and verified by another. We will report our findings descriptively by charting trends in the research.Ethics and disseminationResearch ethics review is not required as this is a scoping review comprised published studies. The results of this research will be published in a manuscript and presented at national and international geriatric and emergency medicine conferences. This research will inform future implementation studies on community paramedic supportive discharge services.RegistrationThis scoping review protocol was registered in Open Science Framework and can be found here: https://doi.org/10.17605/OSF.IO/X52P7.

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Project description:IntroductionFollowing a cancer diagnosis, patients and their caregivers face crucial decisions regarding goals of care and treatment, which have consequences that can persist throughout their cancer journey. To foster informed and value-driven treatment choices, evidence-based information on outcomes relevant to patients is needed. Traditionally, clinical studies have largely focused on a few concrete and easily measurable outcomes such as survival, disease progression and immediate treatment toxicities. These outcomes do not capture other important factors that patients consider when making treatment decisions. Patient-centred outcomes (PCOs) reflect the patients' individual values, preferences, needs and circumstances that are essential to directing meaningful and informed healthcare discussions. Often, however, these outcomes are not included in research protocols in a standardised and practical fashion. This scoping review will summarise the existing literature on PCOs in gastrointestinal (GI) cancer care as well as the tools used to assess these outcomes. A comprehensive list of these PCOs will be generated for future efforts to develop a core outcome set.Methods and analysisThis scoping review will follow Arksey and O'Malley's expanded framework for scoping reviews. We will systematically search Medline, Embase, CINAHL, Cochrane Library and APA PsycINFO databases for studies examining PCOs in the context of GI cancer. We will include studies published in or after the year 2000 up to the date of the final searches, with no language restrictions. Studies involving adult patients with GI cancers and discussion of any PCOs will be included. Opinion pieces, protocols, case reports and abstracts will be excluded. Two authors will independently perform two rounds of screening to select studies for inclusion. The data from full texts will be extracted, charted and summarised both quantitatively and qualitatively.Ethics and disseminationNo ethics approval is required for this scoping review. Results will be disseminated through scientific publication and presentation at relevant conferences.

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Patient-relevant outcomes: what are we talking about? A scoping review to improve conceptual clarity.

Background

Methods

Results

Conclusion

Publications

Patient-relevant outcomes: what are we talking about? A scoping review to improve conceptual clarity.

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