Patients' perspectives show us how to care for their needs when living with an abdominal aortic aneurysm: Development of an eHealth solution.

OBJECTIVES: To explore patients' perspectives on living with an abdominal aorta aneurysm (AAA) to obtain understanding of how to address their needs by changes in infrastructures in AAA surveillance. BACKGROUND: In outpatient care, patients with AAA are offered surveillance by annual or biannual ultrasound scans to monitor AAA progression. When AAA exceeds 50 mm in women and 55 mm in men, surgical interventions are recommended to prevent rupture. Qualitative research shows that this knowledge causes a psychological impact on daily living, which this study responds to. METHODS: Inspired by the methodology of Action Research, we combined field observations, interviews, reflective dialogues and workshops to identify patients´ challenges and make practice changes possible as we developed, tested and integrated an interactive mobile phone application. RESULTS: The interviewed participants expressed the impact of living with AAA to be on a continuum from significant to insignificant. In the significant end, AAA was experienced to influence daily life. In the insignificant end, AAA only came to mind in certain situations. Regardless of where patients were positioned on the continuum, their positions were affected positively or negatively by five factors: aneurysm growth, rupture worries, quality of knowledge, relationship with vascular experts and relatives. We found it possible to support patients moving positively on the continuum by addressing those factors using an interactive mobile application developed for this purpose. CONCLUSION: Action Research was the key to find factors influencing daily living for patients with AAA who pointed the direction to which we developed an application with a digital guide adjusted to the specific patient group addressing their needs and challenges. This study points out the significance of research done with the people involved; a new sustainable infrastructure is the result of the valuable cooperation of both patients and health professionals.

Abdominal Aortic Aneurysm - Disease or a Defect - Patients' Perceptions of Aortic Aneurysm in the Presence of Multimorbidity.

OBJECTIVES: Abdominal aortic aneurysm is associated with substantial comorbidity and significant long-term mortality. Reduction of cardiovascular risk factors and smoking cessation improves prognosis, but implementation of recommendations is suboptimal. Patient's disease-awareness and level of multimorbidity are important factors affecting treatment- adherence. This study explored the perception of disease in patients with abdominal aortic aneurysms and multimorbidity. METHODS: In a qualitative design we assessed patients' perception of aortic aneurysms in the presence of multimorbidity and cardiovascular risk factors. We conducted a workshop including patients from the aneurysm ultrasound-surveillance-program at a tertiary vascular department. Data from the workshop were analyzed using a qualitative exploratory design with an inductive approach. RESULTS: A total of 10 patients with abdominal aortic aneurysm and multimorbidity participated in the workshop. Three categories describing the patient's perception of disease emerged from the analysis. (1) Abdominal aortic aneurysm is not a disease; it is a defect, (2) Someone else is in control, (3) Abdominal aortic aneurysm is an isolated condition. CONCLUSION: Patients with abdominal aortic aneurysms and multimorbidity did not perceive their aneurysm as a disease, but merely as a bodily defect. Growth and rupture of the aneurysm were the main concerns related to the condition, and the participants relied solely on the health professionals to control this by regular ultrasound-surveillance. Consequently, the participants did not perceive abdominal aortic aneurysm as a motivation for cardiovascular risk factor modification by optimization in medication or smoking-cessation.