Moving beyond survival as a measure of success: understanding the patient experience of necrotizing soft-tissue infections.

BACKGROUND: Necrotizing soft tissue infections (NSTIs) represent a devastating spectrum of disease with high case mortality and resource intensive care. Treatment consists of wide surgical debridement and often prolonged periods of intensive care unit care. Major complications are common. The severity of the disease and the aggressive treatment requirements put survivors at risk for significant long-term sequelae related to the trauma of both disease and treatment. Information about the postdischarge impact of NSTIs on survivors is extremely limited. Qualitative approaches are typically used to explore new phenomena and to capture individuals' thoughts, feelings, or interpretations of meaning and process. Therefore, qualitative methods are ideally suited for hypothesis generation to guide future quantitative study and ensure measured outcomes are patient-centered.
MATERIALS AND METHODS: Semistructured interviews were conducted with survivors of NSTIs from a single regional referral center. Stratified purposive sampling was used to select interview candidates based on severity of illness. Descriptive thematic analysis was performed to identify major themes described by the patients.
RESULTS: Interviews with 18 survivors identified three primary domains of experience: (1) individual factors, (2) relational factors, and (3) societal factors. These domains were split into the following two categories: factors effecting the disease process and recovery, and factors that were outcomes of the disease process. Each category yielded between one and seven themes. Themes identified included physical, psychological, relationship, and employment aspects.
CONCLUSIONS: Patient's reported quality of life was significantly affected by their disease and recovery. The results demonstrate that many outcomes of importance for patients are not easily assessed by traditional measures of outcomes. This work illustrates the multidimensional nature of recovery from critical illness, and shows that it represents a massive transition period in the lives of survivors that affects the patient, their family, and the patient's ability to interact with society. Interviews with survivors ensure that the patient voice is heard before developing tools to assess long-term outcomes.