Schwerpunkt
Measurement of shared decision making – a review of instrumentsMessung der Partizipativen Entscheidungsfindung – Übersicht über die Messinstrumente

https://doi.org/10.1016/j.zefq.2011.04.012Get rights and content

Summary

The last years have seen a clear move towards shared decision making (SDM) and increased patient involvement in many countries. However, as the field of SDM research is still relatively young, new instruments for the measurement of (shared) decision making (process, outcome and surrounding elements) are constantly being developed. Thus, the aims of this structured review were to give an update on current developments regarding the measurement in the field of SDM, as well as to give a short overview of published and unpublished instruments. We conducted an electronic literature search in PubMed and the Web of Science database, performed hand searches of relevant journals and contacted key authors in the field. We found eight scales that have been subjected to further psychometric testing, eleven new and psychometrically tested instruments and nine developments that are still in the publishing process. The results show that there is a trend towards measuring SDM processes from a dyadic approach (assessing both the patient's and the clinician's perspective). More and more scales have been developed and tested in languages other than English, which indicates the growing research efforts in various countries. While reliability of most scales is good, they differ in their extent of validation. Further psychometric testing is needed, as well as the development of a theoretical measurement framework in order to improve consistency of measured constructs across research groups.

Zusammenfassung

In den letzten Jahren hat der Ansatz der Partizipativen Entscheidungsfindung (PEF) in vielen Ländern zunehmend an Bedeutung gewonnen. Da es sich um ein relativ junges Forschungsgebiet handelt, werden beständig neue Messinstrumente zur Erfassung von PEF (Entscheidungsprozess, Ergebnis und damit einhergehende Konstrukte) entwickelt. Das Ziel dieser Studie war es, eine strukturierte Übersicht über neue Entwicklungen im Bereich der Messung von PEF zu erstellen, einen Überblick über bekannte Skalen zu geben und einen Ausblick auf neue Entwicklungen zu gewähren. Es wurde eine elektronische Literaturrecherche sowie eine Handsuche durchgeführt. Zudem wurden internationale Experten aus dem Forschungsbereich befragt. Gefunden wurden acht bekannte Instrumente, die weiteren psychometrischen Überprüfungen unterzogen wurden, sowie elf neue Skalen und neun unpublizierte Beiträge zu Messinstrumenten. Die Ergebnisse zeigen eine Entwicklung hin zu vermehrter „dyadischer Messung“ (Erfassung der Sichtweisen von Arzt und Patient) des PEF-Prozesses. Die internationale Relevanz von PEF wird an der vermehrten Entwicklung nicht-englischer Skalen erkennbar. Bei mehrheitlich guter Reliabilität unterscheiden sich die Instrumente hinsichtlich der Validierungsbemühungen. Zur psychometrischen Überprüfung der meisten Skalen bedarf es weiterer Studien. Zudem wird die Entwicklung eines theoretischen Rahmenkonzepts für PEF-Messungen gefordert, um die Messung der verschiedenen relevanten Konstrukte zu vereinheitlichen.

Introduction

As this special issue shows, there has been a clear move towards shared decision making (SDM) and increased patient involvement in health care decision making in many countries in the last years, including recent legislative developments promoting SDM on a macro level (e.g. US 2010 Patient Protection and Affordable Care Act; [1]; UK NHS White Paper [2]). SDM is an approach where clinicians and patients communicate together using the best available evidence when faced with the task of making decisions. Patients are supported to deliberate about the possible attributes and consequences of options, to arrive at informed preferences in making a determination about the best action [3].

The number of studies seeking to empirically analyse SDM and its effects has increased since the late 1990 s. However, when it comes to the measurement in the field of SDM, several challenges remain. First, one must differentiate between the measurement of elements that surround the task of decision making (“decision antecedents” e.g. role preference), the measurement of the decision-making process (“deliberation”/ “pre-decisional process” and “the decision itself”/“determination”, [4]) and the measurement of decision outcomes (“post decision phase”, e.g. regret). In this context it is important to acknowledge the ongoing debate on how to define and measure “good” decision making [4]. Second, given the range and complexity of evaluating SDM, there are so far no general applicable primary measurement tools or standard outcome measures [5], which results in inconsistent measurement, making the comparability of research results in systematic reviews difficult. Therefore, the standardization of outcome measures for decision making studies is recommended [6], [7]. Third, when looking at the measurement of SDM, one has to distinguish between observation measures of the competence and performance of the clinician or the patient and tools that measure the perception of the patient or the clinician on SDM outcome or performance. Recently, there was a call for more research on measurement from these different viewpoints [6]. Further insight into SDM can be gained by triangulation of these many perspectives (e.g. patient, clinician, observer) [8] and by using a dyadic data analysis approach [9].

Several reviews on measurement instruments for SDM have been published in the last years. While some of those reviews focussed on singular viewpoints on SDM, e.g. observer's perspective [10] or physician's perspective [11], others included both observational and self-rating tools [12], [13]. With the exception of one review from 2010, which is only looking at the measurement of decision regret [14], most recent reviews date from 2007. Two additional reviews looked at measures used in studies of patient decision support [15] and in studies of informed decision making about cancer screening [16], both trying to identify and appraise the respective used primary outcome measures. Regarding the different domains of SDM (decision antecedents, decision process, decision outcomes), some reviews focus on one [10], [14] or two [11] of the domains, while others include instruments that measure all domains [12], [13].

As the field of research on SDM is still relatively young, new instruments for the measurement of (shared) decision making (process, outcome and surrounding elements) are constantly being developed. Thus, the main aim of this structured review was to give an update on current developments regarding the measurement of SDM, using the review of Simon and colleagues [13], which was included in the first special issue for the International Shared Decision-Making Conference 2007 in Freiburg, as a starting point. Furthermore, we aimed at giving a short overview over known instruments as well as an outlook on unpublished instruments.

Section snippets

Search strategy

We conducted an electronic literature search of the PubMed database, covering the years 2005 until January 2011. The search was done by a combination of Medical Subject Headings (MeSH) and free text terms. Full details on the search strategies are reported in the appendix. In addition, we searched all publications that cited the instruments included in the review of Simon et al. [13], using the Web of Science database. Furthermore hand-searches were done in the following journals: Patient

Included instruments

The progress through the stages of the review is documented in fig. 1. The main reasons for exclusion of full-texts were that the measured construct was not an aspect of SDM (N = 40) or that the paper did not report on a specific scale (N = 16).

Discussion

This update gives an overview of previously known and current developments on instruments for the measurement of different aspects of SDM and their psychometric testing. This review shows that patient participation and involvement in medical decision making and its measurement is a growing research area: we found eight instruments that have been subjected to further psychometric testing since the review of Simon in 2007 [13], eleven new instruments and nine developments that are still in the

Conflict of interest

Dr. Sepucha receives research and salary support from the Foundation for Informed Medical Decision Making, a not-for-profit organization that develops patient decision aids. France Légaré is Canada Research Chair in Implementation of Shared Decision Making in Primary Care. The other authors do not declare any conflict of interest.

Acknowledgements

We would like to thank Sarah Dwinger, Katharina Braack, Stephanie Pahlke, and Sarah Röttger for their collaboration in the screening and data extraction process. We are also grateful to Levente Kriston and Trudy van der Weijden for providing helpful comments on the project and the manuscript.

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