Access Barriers and Primary Healthcare Experiences of People with Mental Illness: A Pilot Study From the Perspective of Care Coordinators

Background and purpose:  Research finds that compared to the overall population, persons with serious mental illness (SMI) experience higher rates of diabetes, cardiovascular disease, obesity, and smoking, and these are thought to contribute to a shorter lifespan. However, people with SMI have primary care providers and medical visit rates similar to the general population. Proposed explanations for poorer health outcomes include structural factors, provider and patient behaviors, and perceived barriers by persons with SMI that result in delays seeking care and/or failure to obtain needed care.  This research is a pilot study undertaken by a case management agency to learn about barriers and facilitators for receipt of quality health care by the persons with SMI they serve.  Preliminary to collecting data from patients and providers, the aim was to learn the prevalence of serious chronic health problems, usual source of care, type of provider for healthcare, perceived barriers to obtaining primary healthcare, and experiences with primary care as perceived by intensive care coordinators who assist with community integration.

 Method: Thirty-two intensive care coordinators answered questions about the chronic health problems of everyone on their caseloads, and detailed questions about three persons they judged had serious health problems. For the selected persons (n=96) they rated the importance of specific healthcare barriers and facilitators, and if they accompanied the individual to a primary care visit, answered questions about processes observed during the visit (e.g., provider spoke to the patient not the care coordinator, patient was able to ask/answer questions). Data were collected using SurveyMonkey and analyzed with SPSS.  No consumer names or detailed medical information were collected.

 Results:  Across the entire agency, in order, smoking, obesity, substance abuse, and chronic pain were most prevalent. Of the 96 in the selected group 93% had a primary care provider, but only 71% used that provider as usual source of care.  Important barriers perceived by care coordinators were keeping appointments (70%) and understanding and completing paperwork (71%). From observation of medical visits, they reported providers were respectful and listened (79%), and provided patients an opportunity to speak for themselves (88%). In open-ended comments they expressed the view that behaviors associated with mental illness affected the ability to participate in care and wellness activities.   

 Conclusions and Implications: Consistent with national data we find persons with SMI have serious health problems and primary care providers, but may not use them regularly.  The generally positive rating of provider behavior and the attribution of problems to the patient’s behavior raise questions: (1) would patients perceive the interactions similarly and (2) does the care coordinator or provider perception of interfering patient behaviors affect the quality of care received? These are the focus of our future work. The present findings add useful insight as proposals for health homes and alternative structures to assure quality healthcare for persons with SMI are considered.