Chronic kidney disease (CKD) affects 20 million Americans. CKD can lead to end stage renal disease and is associated with morbidity and mortality at all stages. Early management decreases complications and may ameliorate disease progression, but is often reliant on patient self-care. Research suggests that a large proportion of patients lack fundamental knowledge about kidney disease, its implications, and self-care necessary to attenuate CKD progression to end stages. Patient decision aids are designed to facilitate disease communication, increase patient knowledge, clarify patients'values and engage patients in care. There have been no studies using patient decision aids in pre-dialysis CKD. Moreover, there is a paucity of data available to guide development of CKD patient decision aids for use in practice. The primary goal of this research proposal is to elicit stakeholder (i.e. patient and provider) input on information needs and preferences for developing a CKD decision aid that will 1) support patient-centered CKD communication, 2) facilitate shared learning and decision making between patients and providers, and 3) optimize patient engagement in care. To accomplish this objective, I propose to conduct three inter-related but independent studies. First, I will determine information needs and factors that influence self-care in patients with pre-dialysis CKD using structured interviews and a survey in 250 patients seen in the University of Michigan nephrology outpatient clinics. Second, I will identify physician perspectives about what they need to support patient CKD education and to effectively engage patients in care by conducting structured interviews of fifty physicians (25 primary care, 25 nephrology) who practice in the University of Michigan Ambulatory Clinics. The interviews and survey questions in the first two aims will be grounded on two quality improvement methods namely, cause/effect analysis and quality function deployment. Informed by the first two aims, I will develop and test a patient- centered decision aid, designed to facilitate patient-physician communication and support patient decision making and self-care in pre-dialysis kidney disease. The aid will be tested in a randomized trial with the decision aid the exposure, and intermediate patient modifiable characteristics (knowledge, self-efficacy, and treatment decisional conflict), as co-primary outcomes. The proposed research is likely to improve our understanding about the needs and preferences of key stakeholders involved in CKD communication and care, and provide insight into the effectiveness of patient-centered education interventions on outcomes in pre- dialysis kidney disease.
Patients with kidney disease rely on clear communication from health care providers to learn about their diagnosis and things they must do to keep their kidneys healthy. This project combines existing research methods with innovative approaches to enhance communication between providers and patients, with the ultimate goals of improving patient disease knowledge and self-care, and supporting best possible outcomes.