Impact of severe necrotizing fasciitis on quality of life in the Netherlands

Necrotizing fasciitis (NF) is an uncommon, life threatening soft-tissue infection that progresses rapidly. It involves necrosis of the superficial fascia and subcutaneous tissue, leading to severe systemic toxicity [1]. NF is an infection that requires emergent surgical intervention, hemodynamic support on an Intensive Care Unit and targeted antibiotic treatment. In the past decades, lower mortality was achieved by improving treatment modalities, but is still described around 30% [2]. The patients who survive their infection tend to require prolonged periods of hospitalization and have, as result of radical debridement and multiple separate operations, large and often complex wounds that require soft-tissue coverage [3]. These wounds can result in disfiguring scars with defects in body contour. An amputation rate of 15.9% have been reported [4].

Changes in skin and underlying tissue can cause functional limitations, consequences for self-perception and, therefore, can negatively affect patients [5‐7]. The impact of such factors has been well documented in patients surviving major burns. Many factors were found to predict lowered health related quality of life(HRQoL): severity of burns, length of hospital stay (LOS), higher age, female gender, burns to the face/hand, visible scars but also mental factors like depression afterwards, post-traumatic stress symptoms, an avoiding coping style and less emotional and social support. A variety of subdomains was affected shortly after the burn but improved over time. The most affected subdomains were: work, treatment regimen and heat sensitivity (BSHS-B questionnaire), emotional functioning (SF-36 questionnaire) and physical functioning and pain/discomfort (EQ-5D) [8‐12].

Substantially less literature can be found about the quality of life in patients who survived NF. Suijker et al. reported lowered levels of HRQoL in the physical domains physical functioning, role limitations due to physical health and general health [13]. Pikturnaite et al. showed that the subdomains vitality, physical function, role limitations due to physical functioning were the lowest in their study [14]. Czymek et al. research about QoL after Fournier’s gangrene showed similar results as Suijker et al., lowered levels of HRQoL in the physical domains [15]. Urbina et al. found that patients suffering from necrotizing skin and soft-tissue infections (NSTI) had lower levels of HRQoL in multiple subdomains when compared to non-NSTI septic shock patients and when compared to NSTI patients which were not admitted to the ICU during hospitalization [16]. When compared to the research about burns these research are all much smaller (number of cases range from 10 to 30) and no systematic review has been performed yet.

Patients with NF use substantially more healthcare resource utilization (HRU) when compared with patients suffering from burns [6].

The aim of our study was to assess the quality of life of patients who have survived NF.

This study showed that patients who survived NF have a lower self-reported QoL for multiple domains when compared to multiple reference populations. The SF-36 domains that were decreased are: physical functioning, role limitations due to physical health, vitality and general health. For the WHOQol-Bref only one domain was decreased, the physical domain. In the SF-36 the domain physical functioning covers how activities of daily living are performed covering for example self-care and transportation. Likewise role limitations due to physical health describes difficulties in work or activities of daily living due to physical health problems. Vitality covers (feelings of) loss of energy or fatigue. Finally general health describes how patients feel about their own health. Some questions in this domain compare the subject to other people. In the WHOQoL-Bref the physical domain describes, among other things, activities of daily living, mobility, pain, energy and work capacity.

Unfortunately it was not possible to test for normality in the reference populations and aside from this only the means, standard deviations and groups sizes were available. It was not possible to use a nonparametric test because of this. We chose to use an unpaired t test instead. Torrance et al. have shown that using a parametric or nonparametric test did not change the results of statistical tests when testing SF-36 data [22]. Unfortunately this has not been found for when testing WHOQoL-Bref results.

Reference populations showed different mean domain scores for different age groups and gender. The SF-36 reference population showed a significant decrease of mean scores when age is higher and for the female gender for all domains. The used reference population of the Australian WHOQoL-Bref did not test for these differences. When looking at the mean scores a decrease in mean domain score for the physical domain can be seen for higher age. The other domains showed no clear difference when comparing age and gender groups.

Our study population has a higher percentage of males when compared to the SF-36 and Australian WHOQoL-Bref population, 61% vs. 56% vs. 44% respectively (p = 0.0233 and p = 0.0345). Mean ages differ as well, 54 vs. 48 vs. 48 (p = 0.4811 and p = 0.0211). This would mean that if there is a bias when comparing these populations, we should have found a higher domain score in our study population, especially for the physical domains. However, the opposite is the case with lowered domains scores. So if there would be a bias because of the found difference in age and gender the decrease in domain scores could be even bigger.

To our knowledge, this study is the biggest study reporting on quality of life in patients who suffered from necrotizing fasciitis. Other studies (with numbers of cases ranging from 10 to 30) reporting on QoL after NF reported lower scores on physical functioning and general health [13, 15]. This study showed the same finding but an additional significantly lowered score was found for the vitality domain. Another study performed by Pikturnaite et al. found that the domains vitality, physical function, role limitations due to physical functioning were the lowest in their study [14]. However this was not tested by comparing it to a reference population. When looking at the reference population we used, vitality and general health are already the lowest scoring domains. It is difficult to conclude that this outcome is because of NF without statistical testing.

Our found sub-domain scores of the SF-36 are comparable to the results found by Suijker et al. and Pikturnaite et al. (Cyzmek et al. did not report mean scores in their article). On the physical domain we found a score of 62.8. Suijker et al. and Pikturnaite et al. found scores of 73.7 and 58.5, respectively. Role limitations due to physical health scored 60.8 in our research vs. 58.1 and 62.5 in the other two articles. General health was also similar when compared to Suijker et al., 58.1 in this study population vs. 55.0. Urbina et al. did not report exact mean scores in their article but presented them in a figure. When comparing our results to theirs al subdomains had lower mean scores except for bodily pain, which had in higher score in their research.

When setting up this study, four patients from one of the participating hospitals (ETZ) were asked to participate in a focus-group. In association with the department of psychology meetings were held to discuss in how QoL should be measured. Because of this the choice was made to use two questionnaires instead of one as mentioned earlier. We think that in this way we decreased researcher bias when choosing the correct instrument to measure QoL. 44 out of the 60 patients who were discharged alive and did not have a cognitive limitations were contacted and returned both questionnaires. Giving a response rate of 73.3%.

When comparing the research data from burns vs NF it seems that burns effect a wider spectrum of QoL subdomains. Which could mean that burns are more severe than NF. The higher amount of HRU usage suggest otherwise [6]. The found difference in lowered subdomains could also be explained by the big difference in research-size and the amount of research that is done about burns vs. NF. Another explanation for the lowered scores on the emotional/psychological scale could be difference in mechanisms of injury between burns and NF.

The criteria for inclusion of the used database was a minimal duration of ICU-admittance of 24 h. Because of this, the database consist of patients with a more fulminant course of NF excluding less severe cases. This ensures that there is no dilution by the less severe cases and the measured change in QoL is more representative of the impact that NF can have on a patient’s life. This could be named as a limitation to this study. We think that it guarantees that the found decrease in QoL is not diluted by the less severe cases of NF, where nearly no debridement was necessary. The other studies conducted about QoL after NF did not have a severity inclusion norm. Another limitation of this study is that all cases were single time measurements. We think the best alternative using a reference population from a population which is comparable to the study population.

Patients who survive necrotizing fasciitis have decreased (self-reported) quality of life when measured with the SF-36 and WHOQol-BREF questionnaires. The domains in which scores were lowered are mainly the ones covering physical functioning. Our advice is to have this found difference in mind when treating these patients in hospital and during outpatient clinic appointments. Provide patients with enough information during admission to ensure more realistic expectation about their recovery. Involve physiotherapist and social workers during admission and be alert during appointments in the outpatient clinic so that patients get the help they need after discharge. This way we can ensure that everything is done to minimize the residual complaints after NF.