Chronic Disease and Self-Injection: Ethnographic Investigations into the Patient Experience During Treatment

Drug administration by self-injection provides an option to treat chronic inflammatory diseases such as rheumatoid arthritis (RA) and Crohn's disease (CD). However, a negative self-injection experience for patients may reduce patient adherence to the recommended treatment regimen. In this study, a holistic approach was used to identify common themes along the treatment pathway and at self-injection that, if changed, could improve patient experience and treatment outcomes. Two ethnographic studies were conducted: Field Insights CODE (FI[CODE]) examined the treatment pathway within the context of the experience of living with RA or CD, and Injection Mission 2020 (IM2020) focused on the moment of self-injection. FI(CODE) used an open ethnographic approach to interview 62 patients and 10 healthcare professionals (HCPs) from the US and UK. IM2020 included a review of over 50 injection device design information sources from the sponsor, and interviews with 9 patients, 8 HCPs, and 5 medical device designers from the US, UK, Canada, and Japan. FI(CODE) identified suboptimal treatment practices along the treatment pathway in four key areas: treatment team communication, treatment choice, patient empowerment, and treatment delivery. Patients with more treatment options and greater disease understanding were less likely to struggle with the treatment process. IM2020 demonstrated that five related components influenced the self-injection experience: delivery process, emotional state, social perception, educational level, and ritualization of the self-injection process. These analyses highlight several potential areas for improvement, including aligning the device more to patients' needs to improve treatment adherence, better accessibility to educational resources to increase patient disease understanding, and guidance to empower patients to develop an optimal personalized self-injection ritual.