Purpose: Necrotizing soft tissue infections (NSTI) are potentially lethal infections marked by local tissue destruction and systemic sepsis, which require aggressive treatment. Survivors often face a long recovery trajectory. This study was initiated to increase understanding of the long-term impact of NSTI on health related quality of life (HRQoL), and how care may be improved. Methods: Thematic analysis was applied to qualitative data from 25 NSTI-survivors obtained through two focus groups (n = 14) and semi-structured interviews (n = 11). Results: The median age of the participants was 49 years, 14 were female. The median time since diagnosis was 5 years. Initial misdiagnosis was common, causing delay to treatment. Survivors experienced long-term physical consequences (scarring, cognitive impairment, fatigue, sleeping problems, recurrent infections), psychological consequences (traumatic stress symptoms, fear of relapse, adjusting to an altered appearance, sexual issues) and social and relational consequences (changes in social contacts, a lack of understanding). The disease also had a major psychological impact on family members, as well as major financial impact in some. There was a strong desire to reflect on ‘mistakes’ in case of initial misdiagnosis. To improve care, patient and family centered care, smooth transitions after discharge, and the availability of understandable information were deemed important. Conclusion: This study reveals that NSTI have a large impact on physical and psychosocial wellbeing of survivors and their relatives. Except for a few differences (misdiagnosis, fear for re-infection and actual re-infection), the patient experience of patients with NSTI is largely similar to those of burn survivors. Thus, questionnaires to assess HRQoL in burn survivors may be used in future NSTI studies.
- Necrotizing fasciitis
- Quality of life