Abstract

BackgroundTo be able to make informed choices based on their individual preferences, patients need to be adequately informed about treatment options and their potential outcomes. This implies that studies measure the effects of care based on parameters that are relevant to patients. In a previous scoping review, we found a wide variety of supposedly patient-relevant parameters that equally addressed processes and outcomes of care. We were unable to identify a consistent understanding of patient relevance and therefore aimed to develop an empirically based concept including a generic set of patient-relevant parameters. As a first step we evaluated the process and outcome parameters identified in the scoping review from the patients’ perspective.MethodsWe conducted a cross-sectional survey among German general practice patients. Ten research practices of Witten/Herdecke University supported the study. During a two-week period in the fall of 2020, patients willing to participate self-administered a short questionnaire. It evaluated the relevance of the 32 parameters identified in the scoping review on a 5-point Likert scale and offered a free-text field for additional parameters. These free-text answers were inductively categorized by two researchers. Quantitative data were analyzed using descriptive statistics. Bivariate analyses were performed to determine whether there are any correlations between rating a parameter as highly relevant and patients’ characteristics.ResultsData from 299 patients were eligible for analysis. All outcomes except ‘sexuality’ and ‘frequency of healthcare service utilization’ were rated important. ‘Confidence in therapy’ was rated most important, followed by ‘prevention of comorbidity’ and ‘mobility’. Relevance ratings of five parameters were associated with patients’ age and gender, but not with their chronic status. The free-text analysis revealed 15 additional parameters, 12 of which addressed processes of care, i.e., ‘enough time in physician consultation’.ConclusionPatients attach great value to parameters addressing processes of care. It appears as though the way in which patients experience the care process is not less relevant than what comes of it. Relevance ratings were not associated with chronic status, but few parameters were gender- and age-related.Trial registrationCore Outcome Measures in Effectiveness Trials Initiative, registration number: 1685.

Highlights

  • To be able to make informed choices based on their individual preferences, patients need to be adequately informed about treatment options and their potential outcomes

  • Patient-centered care implies that patients, their values, preferences, and individual life and health goals are at the heart of care processes and that patients are involved in care decisions [1]

  • Knowing that the outcomes extracted from former studies might not be exhausting, the results of the first phase will provide the basis for a multi-professional group discussion on patient-relevant outcomes in the second step, which will lead to a two-round online Delphi consensus process [31]

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Summary

Introduction

To be able to make informed choices based on their individual preferences, patients need to be adequately informed about treatment options and their potential outcomes This implies that studies measure the effects of care based on parameters that are relevant to patients. To be able to make a choice based on personal preferences, patients need to be adequately informed about care options and their potential effects, understand the different options, and explore what is most relevant for them [2]. To facilitate this goal, studies must examine the effects of care based on parameters that matter to patients and thereby enable them to make an informed decision. Even though patient-reported outcomes and patient-relevant outcomes might not necessarily be the same, the findings of both reviews demonstrate inconsistencies in effect measurement which limit the comparability of study results regarding the patient benefit

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