Background
Patient and family engagement (PFE) has been defined as a partnership between patients, families, and health care providers to achieve positive health care outcomes. There is evidence that PFE is critical to improving outcomes. We sought to systematically identify and map the evidence on PFE strategies for adults with chronic conditions and identify areas needing more research.
Methods
We searched PubMed, CINAHL, EMBASE, and Cochrane, January 2015 to September 2021 for systematic reviews on strategies for engaging patients with chronic conditions and their caregivers. From each review, we abstracted search dates, number and type of studies, populations, interventions, and outcomes. PFE strategies were categorized into direct patient care, health system, and community-policy level strategies. We found few systematic reviews on strategies at the health system, and none at the community-policy level. In view of this, we also searched for original studies that focused on PFE strategies at those two levels and reviewed the PFE strategies used and study findings.
Results
We found 131 reviews of direct patient care strategies, 5 reviews of health system strategies, and no reviews of community-policy strategies. Four original studies addressed PFE at the health system or community-policy levels. Most direct patient care reviews focused on self-management support (SMS) (n = 85) and shared decision-making (SDM) (n = 43). Forty-nine reviews reported positive effects, 35 reported potential benefits, 37 reported unclear benefits, and 4 reported no benefits. Health system level strategies mainly involved patients and caregivers serving on advisory councils. PFE strategies with the strongest evidence focused on SMS particularly for patients with diabetes. Many SDM reviews reported potential benefits especially for patients with cancer.
Discussion
Much more evidence exists on the effects of direct patient care strategies on PFE than on the effects of health system or community-policy strategies. Most reviews indicated that direct patient care strategies had positive effects or potential benefits.
A limitation of this evidence map is that due to its focus on reviews, which were plentiful, it did not capture details of individual interventions. Nevertheless, this evidence map should help to focus attention on gaps that require more research in efforts to improve PFE.