OBJECTIVES: Patient involvement with treatment decisions can be a key factor in compliance and adherence which have knock on effects for otherwise preventable costs and resource use. The objective was therefore to identify relevant PRO tools and assess the patterns of use.

METHODS: The heoro.com database indexes publications available on PubMed using a variety of categories, one of which is PRO tools. We used the heoro.com search filter to identify all publications that used a PRO tool related to patient involvement from 1960. Patient involvement instruments were defined as relating specifically to the patients’ ability to influence the decision-making process or their satisfaction with the process.

RESULTS: The search included 22 PRO tools and the heoro.com database identified 64 independent publications indexed to one or more of these instruments. The most commonly used were the Appropriateness Evaluation Protocol (AEP), cited in 22 abstracts, the Patient Enablement Instrument (PEI), cited in 11 abstracts, and the Satisfaction with Decision-making scale (SWD), cited in 8 abstracts. Of the publications reviewed, 18 were validation studies for the instruments included, 23 of the studies investigated costs and resource use, with hospitalisation being the focus in 14 of them, 3 were review papers, 27 were retrospective observational studies, and 12 were based on clinical trials. Twenty-three different diseases were discussed, the most common being cancer (5 abstracts), mental health (4 abstracts), and diabetes (3 abstracts). Of the remaining 52 abstracts 33 did not specify a disease. The focus of these non-specific studies was appropriateness, and rates, of hospitalisation (13 abstracts), and use of resources such as medication (2 abstracts) and surgery (2 abstracts).

CONCLUSIONS: A range of instruments are available for assessing patient involvement however only a few are used widely, and overall there is a limited number of publications that include a measure of patient involvement.