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

Abstract

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 ICU 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 post-discharge impact of NSTIs on survivors is extremely limited. Qualitative approaches are typically used to explore new phenomena and to capture individuals' thoughts, feelings, or intepretations 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 Semi-structured 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 3 primary domains of experience: 1) individual factors, 2) relational factors, and 3) societal factors. These domains were split into 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 multi-dimensional nature of recovery from critical illness, and show 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 prior to developing tools to assess long-term outcomes.

Survival and Health-Related Quality of Life after Hospitalization for Necrotizing Soft Tissue Infections of the Upper Extremity: A Long-Term Outcome Study

“…32 The HRQoL after NSTIs has only been assessed in four prior studies (one qualitative and three quantitative studies with respectively 4.2, 3.2, 4.1, and 5 years follow-up and similar sample sizes ranging from 19 to 56 participants). 14,[33][34][35] The biggest differences between these studies and ours are either the study design (qualitative versus quantitative) or the study population (NSTI of all body regions vs. upper score for NSTIs affecting all body regions are lower than the scores found in our study specifically assessing NSTIs of the upper extremity, which were respectively 80.0, 48.7, and 55.3. Based on this comparison, it could be hypothesized that NSTIs of the upper extremity have less consequences for the eventual HRQoL compared with NSTIs affecting other body regions.…”

Necrotizing soft tissue infections: Review and current concepts in treatment, systems of care, and outcomes

“…Early data showed that survivors of NSTI had decreased HRQOL and significant impairments in physical, emotional, and social functioning. 82,84 There is also an increased prevalence of PTSD in both the patient and their partners. A large proportion of survivors are unable to return to previous employment.…”

Health-Related Quality of Life Is Decreased After Necrotizing Soft-Tissue Infections

“…HRQoL is defined as an individual's or a group's perceived physical health and mental health (MH) over time. 12 Described physical consequences of NSTI include scar problems (pain, itching, decreased mobility) 13,14 and loss of energy. 15 Many mental consequences have been described.…”