“You’re Always Jumping Through Hoops”: Journey Mapping the Care Experiences of Individuals With Opioid Use Disorder-associated Endocarditis

Abstract

Objectives: Serious infectious complications of opioid use disorder (OUD), and specifically endocarditis, are becoming more common in the US. Individuals with OUD-associated endocarditis require long periods of complex medical care, often face recurrent addiction- and infection-related complications, and have dismal clinical outcomes. The objective of this study was to perform journey mapping analysis to capture common trajectories and patterns of care for people with OUD-associated endocarditis. Methods: This was an analysis of qualitative semi-structured interviews of individuals who received care for OUD-associated endocarditis. Interviews were conducted among individuals receiving care at a single academic healthcare system in Boston, Massachusetts. Ten participants meeting DSM-5 criteria for at least mild OUD and a culture-positive diagnosis of endocarditis who had previously completed care for OUD-associated endocarditis were recruited from inpatient and ambulatory settings. Details of participant's care episodes were extracted and visualized in an iterative journey mapping process. A grounded theory approach was then used to identify shared themes and care patterns among participants’ journey maps. Results: Common patterns of care included early addiction treatment and intensive outpatient care preceding periods without rehospitalization, while leaving outpatient care and return to drug use often directly preceded rehospitalization. Participants frequently left care by choice and proactively reengaged with care. Conclusions: Journey mapping is a novel, patient-centered approach to capturing the care experiences and trajectories of a patient population experiencing significant stigma, who engage with the healthcare system in unexpected and fragmented ways. For individuals with OUD-associated endocarditis, we identified critical moments to support and engage patients to prevent return to drug use and rehospitalization.

Patient Perceptions of Switching to a Generic Dry Powder Inhaler – Increased Understanding Through Journey Mapping

“… 24 , 25 More recently, this technique has been adapted for use in other contexts, including efforts to better understand how patients navigate complex systems, how patients make health-related decisions, and how to improve patient experiences. 26 , 27 The moderator presented a simplified case study where the hypothetical “journey” described a multistep scenario in which a brand DPI was unexpectedly replaced with a generic DPI (Step 1: ordering a refill for their prescription brand DPI; Step 2: picking up the brand DPI and finding out it had been switched to a generic DPI; and Step 3: using the generic DPI for the first time). At each step, participants explored their perceptions and barriers of switching to a generic DPI by describing their thoughts, feelings, and other reactions.…”

Using journey mapping to understand the patient experience with selecting a Medicare part D plan using a pharmacy consultation service

“…Recent work developing patient journeys with healthcare services has considering data collection from as few as 8 participants sufficient to develop a patient persona. 20 , 21. , 22 The online journey mapping platform requires 18 complete surveys for each condition to develop a corresponding persona and patient journey.…”

“…Patient-centered journey maps have been used in an institutional healthcare setting with the goal of improving the way inpatient care teams deliver services and educate patients on medications, follow-up care, and provide explanations about problems or conditions. 19 , 20 , 21. , 22 The experiences encountered by an individual are typically mapped out for a specific scenario starting with the initial discovery of a challenge and proceeding through information gathering, analysis of various choices, a subsequent decision or purchase, and follow-on experiences.…”

Treatment of Refractory Opioid Use Disorder

“…Approaches like journey mapping, which center around the patient's experience of care, can certainly yield important insights as Bearnot and Mitton have previously demonstrated with OUD-associated endocarditis. 2 As they acknowledge in the last sentence of their letter and in their manuscript, much of the power of journey mapping lies in the visual comparison of patient experiences from their perspectives. Our linear timeline provides an absolute representation of a single patient's interaction with the health system from the perspective of us as providers and the health care system.…”