"I Never Thought They Would Ever Take Off My Toes": A Qualitative Illness Trajectory Study in People With Diabetic Foot Syndrome

Diabetic foot syndrome (DFS) can be prevented, but due to various obstacles preventive measures can only be implemented inadequately. Person-centred care forms the foundation for effective support measures. However, the current lack of a longitudinal perspective on patients' Illness trajectory hinders the development and provision of tailored support. The aim was to describe the illness trajectory experienced by patients with DFS. To investigate the research question we used a qualitative design based on the ‘Interpretive Description’ and conducted a purposive sample of individual interviews in a university hospital's wound outpatient department. Data were analysed according to Braun and Clark's reflexive thematic analysis using the illness trajectory model as a theoretical framework. We included 12 patients with diabetic foot ulcers and recorded wound duration, number of ulceration recurrences and rate of amputation. We identified six illness trajectory-relevant phases: (1) silent or non-apparent diabetes mellitus (DM); (2) occurrence of the first wound: present DFS; (3) needing inpatient treatment; (4) from a mosquito emerges an elephant; (5) being in outpatient treatment and experiencing wound-free periods and (6) the occurrence of recurrences. Participants stated both self-management and care coordination behaviours regarding their treatment. However, due to knowledge gaps, misunderstandings or a desire for ‘normalcy’ and independence from the healthcare system as they juggled multiple comorbidity-related responsibilities, they often acted contrary to behavioural recommendations. ‘Silent diabetes’ is not always prioritised in disease management.