Abstract

BackgroundRecent publications reveal shortcomings in evidence review and summarization methods for patient decision aids. In the large-scale “Share to Care (S2C)” Shared Decision Making (SDM) project at the University Hospital Kiel, Germany, one of 4 SDM interventions was to develop up to 80 decision aids for patients. Best available evidence on the treatments’ impact on patient-relevant outcomes was systematically appraised to feed this information into the decision aids. Aims of this paper were to (1) describe how PtDAs are developed and how S2C evidence reviews for each PtDA are conducted, (2) appraise the quality of the best available evidence identified and (3) identify challenges associated with identified evidence.MethodsThe quality of the identified evidence was assessed based on GRADE quality criteria and categorized into high-, moderate-, low-, very low-quality evidence. Evidence appraisal was conducted across all outcomes assessed in an evidence review and for specific groups of outcomes, namely mortality, morbidity, quality of life, and treatment harms. Challenges in evidence interpretation and summarization resulting from the characteristics of decision aids and the type and quality of evidence are identified and discussed.ResultsEvidence reviews assessed on average 25 systematic reviews/guidelines/studies and took about 3 months to be completed. Despite rigorous review processes, nearly 70% of outcome-specific information derived for decision aids was based on low-quality and mostly on non-directly comparative evidence. Evidence on quality of life and harms was often not provided or not in sufficient form/detail. Challenges in evidence interpretation for use in decision aids resulted from, e.g., a lack of directly comparative evidence or the existence of very heterogeneous evidence for the diverse treatments being compared.ConclusionsEvidence reviews in this project were carefully conducted and summarized. However, the evidence identified for our decision aids was indeed a “scattered landscape” and often poor quality. Facing a high prevalence of low-quality, non-directly comparative evidence for treatment alternatives doesn’t mean it is not necessary to choose an evidence-based approach to inform patients. While there is an urgent need for high quality comparative trials, best available evidence nevertheless has to be appraised and transparently communicated to patients.

Highlights

  • Recent publications reveal shortcomings in evidence review and summarization methods for patient decision aids

  • This publication results from the “Share to Care (S2C)” project conducted at the University Hospital Medical Center Schleswig Holstein (UKSH), Campus Kiel, in Germany from 2017 to 2021 [7]

  • In this paper we describe the second component of this large scale Shared Decision Making (SDM)-project and how it was “filled with life” in some more detail: the development of Patient Decision Aid (PtDA) to support patient decision making, provide evidence-based information on the pros and cons of treatment alternatives to patients and facilitate better SDM communication between physician and patient including the exchange of experiences, values and preferences

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Summary

Introduction

Recent publications reveal shortcomings in evidence review and summarization methods for patient decision aids. In line with the definition of the International Patient Decision Aids Standards (IPDAS) Collaboration and as summarized by Stacey et al 2017 [4, 5], PtDAs are understood as “Interventions that support patients to make decisions, by making decisions explicit, providing information about options and associated benefits/harms, and helping clarify congruence between decisions and personal values” In line with this definition of PtDAs we define SDM as an approach where clinicians and patients share the best available evidence on treatment alternatives, discuss individual experiences and the patients’ situation, explore the patients’ preferences regarding treatment alternatives and where the patient gets to an informed decision [6]. Details on these have been published in a study protocol [7]

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