Review article
Measuring the involvement of patients in shared decision-making: a systematic review of instruments

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Abstract

We wanted to determine whether research instruments exist which focus on measuring to what extent health professionals involve patients in treatment and management decisions. A systematic search and appraisal of the relevant literature was conducted by electronic searching techniques, snowball sampling and correspondence with field specialists. The instruments had to concentrate on assessing patient involvement in decision-making by observation techniques (either direct or using audio or videotaped data) and contain assessments of the core aspects of ‘involvement’, namely evidence of patients being involved (explicitly or implicitly) in decision-making processes, a portrayal of options and a decision-making or deferring stage. Eight instruments met the inclusion criteria. But we did not find any instruments that had been specifically designed to measure the concept of ‘involving patients’ in decisions. The results reveal that little attention has been given to a detailed assessment of the processes of patient involvement in decision-making. The existing instrumentation only includes these concepts as sub-units within broader assessments, and does not allow the construct of patient involvement to be measured accurately. Instruments developed to measure ‘patient-centredness’ are unable to provide enough focus on ‘involvement’ because of their attempt to cover so many dimensions. The concept of patient involvement (shared decision-making; informed collaborative choice) is emerging in the literature and requires an accurate method of assessment.

Introduction

Although there is increasing interest in the outcomes of involving patients in aspects of healthcare decisions, albeit with a recognition that a flexible approach is needed in practice [1], there is no agreed construct to describe ‘involvement’ [2]. ‘Patient-centredness’ is proving to be too ill-defined, [3] a method that in reality contains many constructs, and a recent comparison of instruments designed to measure it revealed the difficulty of achieving reliable tools [3], [4]. Although involving patients is an important element of patient-centred practice, patient participation in decision-making has not been defined in sufficient detail to allow rigorous evaluation. Research into the roles patients prefer within decision-making processes has been mostly based on hypothetical scenarios [5], [6] and reveals a spectrum of views. Hypothetical determinations may not equate with the views of patients who have experienced actual involvement in decision-making. There is evidence from studies on screening that the wishes of patients who are initially uninformed change after they have become aware of the harms and benefits of different treatment options [7]. This is likely to be especially true if the clinician is skilled at providing information and is sensitive to anxieties that may be generated by the potential responsibility of decision-making. It is also important to conceptualise patient involvement as a process that will inevitably vary from one consultation to another. We were unaware of a method to measure ‘involvement’, and therefore undertook a systematic search of the literature with the aim of appraising the instruments identified.

Patient involvement can be viewed as occurring along a spectrum, from paternalism at one end to complete autonomy at the other [8]. ‘Shared decision-making’ involves both the patient and the clinician being explicit about their values and treatment preferences [9]. The approach involves arriving at an agreed decision, to which both parties have contributed their views. The stages and skills of ‘shared decision-making’ are being investigated by firstly using qualitative methods to investigate how practitioners and patients conceptualise ‘involvement’, and secondly by an empirical study which analyses consultations that aim to ‘share decisions’ [10], [11], [12].

Two assumptions underpin this review. Firstly, that involvement in decision-making is a negotiated event that occurs between a clinician and patient, either explicitly, or as is more common, implicitly.

The second assumption is that choices legitimately exist in most clinical situations, and that it is acceptable — vital according to those who place autonomy first amongst ethical principles — to portray options to patients, at least to some level of detail (excepting extremis, intellectual impairment, unconsciousness and psychiatric risk). Any attempt to measure involvement in decision-making should therefore consider to what degree (if any) a health professional portrays choices and invites patients to participate in the decisions, along with other processes that may be associated (such as an exploration of views, concerns, and fears). Involvement is not considered as a rhetorical gesture. Successful ‘involvement’ starts from the position of respecting a patient’s right to autonomy and self-determination, even when a fully informed patient, aware of a contrary professional viewpoint, decides a divergent treatment or management plan. The ethical stance assumed here is one of optional autonomy rather than mandatory autonomy (where patient involvement in decision-making is a requirement) [13].

Decision-making in a clinical setting involves many factors, including prior experience, existing knowledge, trust and confidence in the clinician, personality traits, exposure and access to information, satisfaction with the consultation process, and the influence of family and others [13]. Despite this complex context, we consider that patient involvement in the decision-making process within the consultation is an important construct to measure accurately, for many reasons. It is necessary if we are to gauge how involvement contributes to determining adherence to treatment choices, and whether involvement per se contributes in other ways to potential health gain.

Section snippets

Objectives

Having first appraised the literature on how professionals should most appropriately involve patients in decision-making processes [14], and completed a qualitative study on the ‘competencies’ required [12], we undertook a systematic search for instruments that focused on an evaluation of the extent professionals involve patients in decision-making (and the quality) as observed by a third party. This is not to dismiss the literature that has focused on perceived involvement (as viewed by

Methods

The methods of systematic reviewing have been developed primarily to summarise research that investigates the effectiveness of interventions [18]. This review applies the concept of a systematic and explicit method of assessment to the area of instrumentation. There are agreed methods for both developing and confirming the validity and reliability of health measurement instruments, which will be used as the basis for assessing the quality of instruments in this review [19].

Results

The searching strategy identified a total of 4929 abstracts from the following databases: combined listing from Medline, Psychlit and Embase, 2460; CinAHl, 2395; ASSIA, 74. After dual and independent assessments, a total of 107 articles were retrieved for detailed appraisal. Information and articles were received from 29 of the 60 authors contacted (see acknowledgements); 52 consultation assessment instruments that met only the first inclusion criterion of this review are listed in Table 3.

Principal findings

Existing instrumentation in the field of professional–patient interaction research and evaluation does not enable the construct of patient involvement to be measured comprehensively. Although an important finding, it is not a surprising one. None of the instruments we found (and included) were designed specifically to measure ‘patient involvement’. The study of interactive communication within clinical consultations was pioneered in the 1960s, and many instruments have been developed since to

Acknowledgements

The authors are grateful to Vikki Entwistle and Sharon Caple for the advice and comments received on the drafting of this paper. We thank the following researchers for responding to our request for information and their willingness to contribute further materials: E Callahan, A Coulter, C Charles, R Deber, L Degner, V Entwistle, M Holmes-Rovner, R Hulsman, G Makoul, D Mazur, B Molewijk, L Ong, D Pendleton, R Pill, R Savage, T Schofield, WB Stiles, R Street, M Stewart, N Stott, A Stiggelbout, J

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