Abstract
BackgroundWith 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.MethodsWe 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.ResultsWe 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.ConclusionThis 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.
Highlights
With respect to patient-centered care, measuring care effects based on patient-relevant outcomes is becoming increasingly important
In the sense of shared decision-making, involving patients in decisions implies that patients are adequately informed about existing care options and their potential effects, understand these options, and are given the opportunity to explore what is most relevant to them in order to make a choice based on their personal preferences [2]. This means that for shared decision-making, effect measurements based on parameters that matter to patients are urgently needed. This assumes that studies examine the effects of care that is based on outcomes which are relevant to patients, but so far systematic reviews conclude that such patientrelevant outcomes are underrepresented in recent clinical trials [3–5]
To the IQEHC’s understanding of patient-relevant outcomes, the working group on quality of care and patient safety research of the German Network for Health Services Research (DNVF) mentions survival and quality of life as factors that are relevant to patients, and includes social aspects, such as social reintegration, in its interpretation [8]
Summary
With respect to patient-centered care, measuring care effects based on patient-relevant outcomes is becoming increasingly important. In Germany, the Institute for Quality and Efficiency in Health Care (IQEHC) officially examines the benefits and harms of medical interventions for patients To this end, the IQEHC considers parameters to be relevant to patients when they represent how a patient feels, functions or survives; notably mortality, morbidity, and quality of life [6]. To the IQEHC’s understanding of patient-relevant outcomes, the working group on quality of care and patient safety research of the German Network for Health Services Research (DNVF) mentions survival and quality of life as factors that are relevant to patients, and includes social aspects, such as social reintegration, in its interpretation [8] These outcomes are based on the understanding that patientrelevant outcomes reflect the effects of changes in the individual patient’s health status [8]
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