“It's just like putting your socks on”: patients' perspectives on inflammatory bowel disease medication adherence

Abstract

Background: A careful, often life-long, medication regimen is central to therapy for Inflammatory Bowel Disease (IBD) - a chronic gut disorder. Hence, medication adherence (MA) – patients taking medications in line with prescription – is important. Previous research indicates that a third of patients with IBD in southern New Zealand have poor medication adherence (MA). Objective: This study investigated these patients' experiences to determine factors that influence their MA, for the first time. Methods: Two focus group discussions (FGDs) were held with IBD patients in Otago, New Zealand. Reflexive thematic analysis from a ‘direct realist’ viewpoint was used to analyse the data. Results: Data were analysed in three segments: perceptions, experiences and support. Participants perceived MA as a “duty” that was very important to their wellbeing. The participants' MA was centred around a routine requiring proactivity to maintain. MA was negatively impacted by side effects and regimen factors including (high) pill numbers/dose frequency, and getting refills was framed as challenging; whilst healthcare professionals were presented as major MA facilitators. Lastly, the support structures identified included family, friends and colleagues as well as targeted health system factors e.g. medication subsidies. Conclusions: Factors spanning those related to the patients, their socioeconomic status, the disease, IBD therapy and the health system were presented as influencing IBD patients' MA in southern NZ. Thus, multifaceted interventions are needed across the health system to overcome the inhibiting and promote the facilitating elements.