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. UCB Pharma. Some medicines used to treat long-term conditions, such as rheumatoid arthritis or Crohn’s disease, are injected under the skin. Often, patients can choose to inject medicines themselves (self-injection). This must be done correctly for the medicines to work properly. But, the training surrounding self-injection is uneven and often cannot address the fundamental problems facing all self-injecting patients. What healthcare improvements could help patients self-inject successfully? To find out, we interviewed people living with rheumatoid arthritis or Crohn’s disease, while others were doctors, nurses, and people who design injection devices. We found four common problems in the overall healthcare that patients received: In addition, five factors were identified that affected patients’ experiences of self-injection: If doctors and nurses can support patients by providing a greater choice of treatments and injection devices, and teaching more about self-injection, this could improve patients’ experiences and allow medications to work better. Healthcare professionals should help patients to develop their own, optimal routine for self-injection.