Signs, symptoms and diagnosis of necrotizing fasciitis experienced by survivors and family: a qualitative Nordic multi-center study

Background: Necrotizing soft tissue infection is the most serious of all soft tissue infections. The patient's life is dependent on prompt diagnosis and aggressive treatment. Diagnostic delays are related to increased morbidity and mortality, and the risk of under- or missed diagnosis is high due to the rarity of the condition. There is a paucity of knowledge regarding early indications of disease. The aim of the study has thus been to explore patients' and families' experiences of early signs and symptoms and to describe their initial contact with the healthcare system. Methods: A qualitative explorative design was used to gain more knowledge about the experience of early signs and symptoms. Fifty-three participants from three study sites were interviewed. The framework method was used for data analysis. Results: Most of the participants experienced treatment delay and contacted healthcare several times before receiving correct treatment. The experience of illness varied among the participants depending on the duration of antecedent signs and symptoms. Other important findings included the description of three stages of early disease progression with increase in symptom intensity. Pain experienced in necrotizing soft tissue infections is particularly excruciating and unresponsive to pain medication. Other common symptoms were dyspnea, shivering, muscle weakness, gastrointestinal problems, anxiety, and fear. Conclusion: Our study adds to the understanding of the lived experience of NST1 by providing in-depth description of antecedent signs and symptoms precipitating NS71-diagnosis. We have described diagnostic delay as patient-related, primary care related, or hospital related and recommend that patient and family narratives should be considered when diagnosing NSTI to decrease diagnostic delay.