Understanding Gaps Between Daily Living and Clinical Settings in Chronic Disease Management: Qualitative Study

Abstract

Background Management of chronic conditions entails numerous activities in both clinical and daily living settings. Activities across these settings interact, creating a high potential for a gap to occur if there is an inconsistency or disconnect between controlled clinical settings and complex daily living environments. Objective The aim of this study is to characterize gaps (from the patient’s perspective) between health-related activities across home-based and clinical settings using anticoagulation treatment as an example. The causes, consequences, and mitigation strategies (reported by patients) were identified to understand these gaps. We conceptualized gaps as latent phenomena (ie, a break in continuity). Methods Patients (n=39) and providers (n=4) from the anticoagulation clinic of an urban, western mountain health care system were recruited. Data were collected through primary interviews with patients, patient journaling with tablet computers, exit interviews with patients, and provider interviews. Data were analyzed qualitatively using a theory-driven approach and framework method of analysis. Results The causes of gaps included clinician recommendations not fitting into patients’ daily routines, recommendations not fitting into patients’ living contexts, and information not transferred across settings. The consequences of these gaps included increased cognitive and physical workload on the patient, poor patient satisfaction, and compromised adherence to the therapy plan. We identified resources and strategies used to overcome these consequences as patient-generated strategies, routines, collaborative management, social environment, and tools and technologies. Conclusions Understanding gaps, their consequences, and mitigating strategies can lead to the development of interventions that help narrow these gaps. Such interventions could take the form of collaborative health information technologies, novel patient and clinician education initiatives, and programs that strongly integrate health systems and community resources. Current technologies are insufficient to narrow the gaps between clinical and daily living settings due to the limited number and types of routines that are tracked.