Understanding Alveolar echinococcosis patients' psychosocial burden and coping strategies-A qualitative interview study.

BACKGROUND: Alveolar echinococcosis (AE) is a serious parasitic zoonotic disease that resembles malignancy with clinically silent infiltrative growth predominantly involving the liver. AE patients show high levels of comorbid psychological burden and fear of disease progression. This study aimed to examine AE patients' perspective on their disease-related psychosocial burden using qualitative methods. METHODS: We conducted N = 12 semi-structured interviews with AE patients focusing on their disease-related psychosocial burden, coping strategies, information seeking behavior, and subjective illness concepts. To this end, AE patients from a previous quantitative cross-sectional study were invited to participate. After verbatim transcription, interviews were analyzed thematically. RESULTS: After analysis, data was grouped into five main themes: A) Perceived disease-related burden, B) Coping with disease-related burden, C) Disease-related impact on their social environment, D) Facing the future with the disease, and E) Disease-related information seeking behavior and subjective illness concepts. All participants perceived AE as a severe disease with inextricably linked biological, psychological, and social effects. Key positive influences reported included the provision of information and access to informal and formal support, including the ability to lead active personal and professional lives for as long as possible. Self-directed, web-based information seeking often led to increased feelings of hopelessness and anxiety. CONCLUSION: Our findings underscore the need to consider psychosocial morbidity in AE patient management. To reduce psychological burden, address disease-related apprehensions, and to prevent stigmatization, health professionals need to provide AE patients with comprehensive disease-related information to improve patient and social awareness.

Psychological burden and resilience factors in patients with Alveolar Echinococcosis - A cross-sectional study.

BACKGROUND: Alveolar echinococcosis (AE) is a parasitic zoonosis resembling malignancy due to its clinically silent infiltrative growth, predominately in the liver. The comorbid psychological burden and fear of disease progression in AE patients have hardly been examined to date. The aim of this study was to evaluate depression, anxiety, quality of life, and fear of disease progression in AE patients. METHODOLOGY/PRINCIPAL FINDINGS: In a cross-sectional study, n = 57 AE patients were invited to report on depression (PHQ-9), anxiety (GAD-7), somatic symptom load (SSS 8), trauma symptoms (PTSS-10), quality of life (SF-12) and on fear of disease progression (FoP-Q-SF) using validated psychometric instruments. Furthermore, attachment style was assessed (RQ-2). N = 47 patients completed the questionnaires (response rate 82.5%). Depression, anxiety, and somatic symptom load were above norm sample means, while physical quality of life was below norm sample means. Existing traumatic symptoms were comparable to those in cancer patients, while fear of disease progression even exceeded cancer patient scores. Patients with a secure attachment style showed less pronounced psychological burden than patients with other attachment styles. Adequate, guideline-based depression and anxiety treatment was very rarely installed. CONCLUSION/SIGNIFICANCE: The present study revealed remarkable levels of psychological burden in AE patients. In our study sample, we discovered high depression and anxiety levels, a significant reduction of physical quality of life, and fear of disease progression. These results show how important it is for AE patients to be thoroughly assessed with regard to psychological symptoms and mental disorders so that those in need can receive sufficient psychosocial support and treatment according to official guidelines.