Satisfaction Among Sepsis Survivors With the Information Received on Their Disease, Its Prevention, and Treatment

Results of a Telephone Survey

Sepsis survivors frequently suffer from significant cognitive and functional long-term sequelae (1). Both improving patient information and taking account of long-term sequelae during the follow-up care reduce the risk of meeting a combined endpoint consisting of rehospitalization and mortality after sepsis (2). However, patients state that they receive insufficient information about their disease at the time of treatment (3). The aim of our study is to collect data on how satisfied sepsis survivors are with the disease- and treatment-related information received and to identify predicators for the level of satisfaction.

Method

In the SEPFROK study (DRKS00016340), 287 sepsis survivors were recruited from the intensive care units of the Jena University Hospital and the hospital Charité Universitätsmedizin Berlin as well as from the Mid German Sepsis cohort. After giving their informed consent, participants were contacted by phone at six and twelve months after discharge from hospital and asked about health-related impairments, satisfaction with the support from medical staff and information about prevention and treatment. The assessment was based on a 4-level scale (1 = does not apply, 2 = rather does not apply, 3 = rather does apply, and 4 = applies). Predictors of satisfaction with the information about sepsis sequelae were investigated using multiple regression analysis. Open answers were analyzed by means of Mayring‘s qualitative content analysis. The earliest interview date after discharge was included in the analysis.

Results

Of the 1536 sepsis patients, 855 survived hospitalization; of these, 307 consented to take part in the survey and 287 took part. The 287 participating sepsis survivors were surveyed for 7.25 months on average post sepsis (Table 1). Prior to their hospitalization, 58.5% of patients had ever heard of sepsis or blood poisoning. 36.9% of the respondents only learned that they had sepsis after discharge from hospital (of these, 67.0% only through our survey). The mean levels of satisfaction with regard to scope and comprehensibility of the information on sepsis treatment in the hospital were 2.94 (standard deviation [SD] = 1.11) and 3.20 (SD = 1.03), respectively. At the time of the survey, the majority of patients reported multiple subjective physical, psychological and/or cognitive symptoms (Table 1). 51.9% were aware that sepsis and its treatment can have long-term health consequences. The mean levels of satisfaction with regard to scope and comprehensibility of information on sepsis sequelae (M = 2.08; SD = 1.22 and M = 2.28; SD = 1.31, respectively) were significantly lower compared to those of acute treatment. At the time of the survey, 67.9% had undergone rehabilitation. Satisfaction with regard to information on rehabilitation and follow-up care (e.g., achievable rehabilitation goals, available rehabilitation facilities) was rated by the respondents as rather sufficient and understandable (M = 2.90, SD = 1.24 and M = 3.19, SD = 1.16, respectively). The respondents rated the support they received from the hospital‘s social services or their primary care physician when applying for aids, rehabilitation, pensions or care as rather satisfactory (M = 3.16, SD = 1.18 and M = 3.48, SD = 0.96, respectively). However, the open answers of 89 patients showed that they want more information on rehabilitation (number of mentions: n = 24), more extensive follow-up care information (n = 19), more support with applications (n = 19), more individualized, in particular sepsis-specific patient information (n = 17), more frequent contact with social services or contact at more appropriate times (n = 14), and information on perspective health maintenance (n = 12). Respondents rated the support provided by relatives after discharge from hospital as very satisfactory (M = 3.70; SD = 0.82). With regard to prevention after sepsis, satisfaction with advice on important vaccinations (influenza and pneumococci) was lower (M = 2.53; SD = 1.44 and M = 2.23; SD = 1.41, respectively) compared to satisfaction with information on rehabilitation and follow-up care. Information on ways to improve one‘s own health behavior (e.g., nutrition, healthy behaviors) were described as rather sufficient (M = 2.89; SD = 1.26) and understandable (M = 3.17, SD = 1.21). With regard to satisfaction with the information on sepsis sequelae, the multiple regression analysis with age, sex, level of education, SOFA score, and number of impaired domains (Table 2) showed only minor stochastic correlations. Both the low R² differences of the predictors and the very low proportion of variance explained by the model (R² = 0.08; adjusted R² = 0.05) indicate that the predictors are of low relevance.

Table 1

Patient demographics and clinical characteristics (N = 287)

Table 2

Unstandardized regression coefficients (b) for the regression analysis for satisfaction with information on sepsis sequelae

Discussion

Our study shows that sepsis survivors are frequently informed about their disease only after discharge from hospital and that they feel inadequately informed, particularly with regard to sepsis sequelae and options for sepsis prevention. This may be one reason why these tertiary prevention options are underutilized and why many sepsis survivors are rehospitalized, in particular with ambulatory care sensitive conditions (4). Since our study did not find any relevant predictors for satisfaction with information on sepsis sequelae, the development of information and training materials which can be easily understood by laypersons for all affected parties and the creation of a patient guideline can be regarded as building blocks of a better patient education approach. Sepsis and sepsis sequelae should be increasingly integrated into the curricula of healthcare professions, as healthcare professionals have relevant knowledge gaps with regard to sepsis too (5). Our study was not designed to identify the causes of satisfaction/dissatisfaction. Selection bias may have resulted from the inclusion procedure. Furthermore, it cannot be ruled out that sepsis patients may not remember receiving information due to the acuteness of their condition and/or cognitive impairment which underlines the need for providing patient information repeatedly. In summary, it can be stated that sepsis survivors often do not feel adequately informed about both preventive measures and sepsis sequelae. Efforts should be directed at providing information appropriate to the target group in a structured way.

Sebastian Born, Claudia Matthäus-Krämer, Konrad Reinhart, Christiane S. Hartog, Carolin Fleischmann-Struzek

Institute of Infection Medicine and Hospital Hygiene, Jena University Hospital, Jena, Germany
(Born, Matthäus-Krämer, Fleischmann-Struzek) [e-mail]

Center for Sepsis Control and Care, Jena University Hospital, Jena, Germany
(Born, Matthäus-Krämer, Fleischmann-Struzek)

Department of Anesthesiology, Division of Operative Intensive Care Medicine, Charité – Universitätsmedizin Berlin, Berlin, Germany (Reinhart)

Klinik Bavaria, Kreischa, Germany (Hartog)

Funding

German Innovation Fund for health services research of the German Federal Joint Committee (G-BA) (FKZ 01VSF17010)

Conflict of interest
The authors declare no conflict of interest.

Manuscript received on 9 June 2023; revised version accepted on 20 October 2023

Translated from the original German by Ralf Thoene, MD

Cite this as:
Born S, Matthäus-Krämer C, Reinhart K, Hartog CS, Fleischmann-Struzek C: Satisfaction among sepsis survivors with the information received on their disease, its prevention, and treatment—results of a telephone survey. Dtsch Arztebl Int 2023; 120: 871–2. DOI: 10.3238/arztebl.m2023.0232

References

1. Iwashyna TJ, Ely EW, Smith DM, Langa KM: Long-term cognitive impairment and functional disability among survivors of severe sepsis. JAMA 2010; 304: 1787–94

2. Kowalkowski MA, Rios A, McSweeney J, et al.: Effect of a transitional care intervention on rehospitalization and mortality after sepsis: a 12-month follow-up of a randomized clinical trial. Am J Resp Crit Care 2022; 206: 783–6

3. Gallop KH, Kerr CE, Nixon A, Verdian L, Barney JB, Beale RJ: A qualitative investigation of patients‘ and caregivers‘ experiences of severe sepsis. Crit Care Med 2015; 43: 296–307

4. Prescott HC, Langa KM, Iwashyna TJ: Readmission diagnoses after hospitalization for severe sepsis and other acute medical conditions. JAMA 2015; 313: 1055–7

5. Fiest KM, Krewulak KD, Brundin-Mather R, et al.: Patient, public, and healthcare professionals‘ sepsis awareness, knowledge, and information seeking behaviors: a scoping review. Crit Care Med 2022; 50: 1187–97