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

ABSTRACT

INTRODUCTION: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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. FUNDING: 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 received1.There were communication problems between different healthcare professionals and between healthcare professionals and patients, for example about treatment options or goals.2.Each level in the healthcare system (e.g., the nurse, doctor, hospital board, health insurance company) made decisions that limited how many treatment options were presented to patients for consideration.3.Patients were not empowered, as they felt they lacked personal input, information, and control in treatment decisions.4.Healthcare professionals focused on disease treatment but not patient experience; they did not fully explain how to perform injections (delivery), leaving patients to figure it out by trial and error. In addition, five factors were identified that affected patients' experiences of self-injection1.Process of injection minimal one-on-one instruction for self-injection left some patients anxious and more prone to mistakes.2.Emotions some patients were better than others at 'overriding' emotions (e.g., fear) when self-injecting.3.Views on injections there was negative social stigma around injections, but patients had greater trust in more technological, modern devices.4.Education doctors often failed to explain how to manage fear and anxiety.5.Developing a ritual patients with a ritualized routine for when, where, and how to self-inject were more confident. 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.