Family and friend participation in primary care visits of patients with diabetes or heart failure: patient and physician determinants and experiences

Abstract

Background: Professional and patient groups have called for increased participation of patients' informal support networks in chronic disease care, as a means to improve clinical care and self-management. Little is known about the current level of participation of family and friends in the physician visits of adults with chronic illnesses or how that participation affects the experience of patients and physicians.

Methods: Written survey of 439 functionally independent adults with diabetes or heart failure and 88 of their primary care physicians (PCPs). Patients were ineligible if they had a memory disorder, needed help with activities of daily living, or were undergoing cancer treatment.

Results: Nonprofessional friends or family ("companions") regularly participated in PCP visits for nearly half (48%) of patients. In multivariable models, patients with low health literacy (adjusted odds ratio [AOR]: 2.9, confidence interval [CI]: 1.4-5.7), more depressive symptoms (AOR: 1.3, CI: 1.1-1.6), and 4 or more comorbid illnesses (AOR: 3.7, CI: 1.3-10.5) were more likely to report companion participation. Patients reported that they were more likely to understand PCP advice (77%) and discuss difficult topics with the physician (44%) when companions participated in clinic visits. In multivariable models, companion participation was associated with greater patient satisfaction with their PCP (AOR: 1.7, CI: 1.1-2.7). Most PCPs perceived visit companions positively, however 66% perceived 1 or more barriers to increasing companion participation, including increased physician burden (39%), inadequate physician training (27%), and patient privacy concerns (24%).

Conclusion: Patients' companions represent an important source of potential support for the clinical care of functionally independent patients with diabetes or heart failure, particularly for patients vulnerable to worse outcomes. Companion participation in care was associated with positive patient and physician experiences. Physician concerns about companion participation are potentially addressable through existing training resources.

Figure 1. Companion Experiences With Family Participation In PCP Care

“When your friends or family talk to your [primary care] doctor, how often have you had the following experiences?” (N=193*)

Figure 2. a: Physician Experiences when Companions Participate in Patient’s PCP Care

“When your diabetes or heart failure patients’ friends or family talk to you about your patient’s care, how often have you had the following experiences?” b: Physician Barriers to More Companion Participation “How do you feel about talking with family and friends of diabetes or heart failure patients more often?”