“I know what I'm supposed to do, but I don't do it”: patient-perceived risk factors that lead to their lower extremity amputations

BACKGROUND: The purpose of this study is to extend on our previous research by exploring patient-perceived factors that lead to their Lower Extremity Amputations (LEA). LEA are a serious complication of Type 2 Diabetes Mellitus (T2DM), LEA are thought to be preventable with early detection and management of risk factors. Our previous study identified that these factors extend beyond the typical biological and modifiable risk factors and may also extend to patient awareness and competing priorities. Therefore, this research explored these issues in further detail, identifying patient-perceived factors that lead to their LEA. METHODS: A qualitative descriptive methodology involving non-probability purposive sampling was used to recruit inpatients at a tertiary metropolitan hospital in South Australia. Semi-structured interviews were conducted, and data were transcribed verbatim. Data from the interviews were analysed using thematic analysis and the constant comparison approach. RESULTS: A total of 15 participants shared their perspectives of risk factors for LEA. Two main themes emerged: intrinsic and extrinsic factors. Intrinsic factors identified in this study included identity, ambivalence, denial, inevitability, and helplessness. Extrinsic factors related to resources, rapport with healthcare professionals, and management of care. CONCLUSIONS: Through identifying that a combination of perceived personal attributes (intrinsic) and system-level (extrinsic) factors likely contribute to LEA, this study highlights the complexity of factors that contribute to patients' perceptions of what led to their diabetes related LEA. These findings support the importance of a nuanced approach in managing patients with diabetes who are at risk of LEA as it's likely patients’ personal circumstances, day-to-day life’s requirements and responsibilities, their interaction with healthcare professionals all seemingly contribute to how risks are viewed and managed. Tackling this challenge will require reimagining diabetes care, acknowledgement of risk factors beyond the obvious and addressing persistent access and workforce issues. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13047-023-00675-3.