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

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-centeredness' 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.