key: cord-0703344-87nerfqd authors: Wallin, Ewa; Hultström, Michael; Lipcsey, Miklos; Frithiof, Robert; Rubertsson, Sten; Larsson, Ing‐Marie title: Intensive care‐treated COVID‐19 patients’ perception of their illness and remaining symptoms date: 2021-11-14 journal: Acta Anaesthesiol Scand DOI: 10.1111/aas.13992 sha: 0ec60fb76daa3c9ed7595d93906107d071e2cf9a doc_id: 703344 cord_uid: 87nerfqd BACKGROUND: The remaining symptoms in patients with coronavirus disease 2019 (COVID‐19) treated in intensive care unit are limited described. Therefore, we assessed patient's perception of their COVID‐19 disease, stay in intensive care, and remaining symptoms three to six months after intensive care. METHODS: Prospective cohort study was performed in one intensive care unit of a university hospital in Sweden during the first wave. A questionnaire with open‐ended questions and closed‐ended questions was used. Data were analyzed using qualitative and quantitative content analysis and descriptive statistics. RESULTS: Out of 123 patients treated for COVID‐19, 64 answered the questionnaire 3–6 months after discharge from intensive care. Memories from illness and hospital stay revealed in three categories; awareness of the illness, losing anchor to reality and being cared for in a dynamic environment. Information was perceived as spare by 48% and they wanted the information to be more personal. The diary was perceived as personal and was received by 33% patients. The relationship with family was affected among 39% and 13% of the patients indicated that they had not resumed their daily life. A large amount, 84%, indicated that they had remaining symptoms from COVID‐19. The dominated symptoms were impaired strength and energy both physically and mentally. CONCLUSION: Patients reported a variety of physical and mental symptoms, and revealed memories from the ICU, and specific awareness of other patients’ health. It illustrates the need for screening patients for remaining symptoms after COVID‐19 disease and ICU care and may affect resuming patients’ daily life. Post-intensive care syndrome (PICS) affects many survivors of intensive care and is characterized by persisting long-term consequences, encompassing both physical, psychological, and cognitive impairment. [1] [2] [3] [4] With the large number of ICU patients treated at intensive care units (ICUs) during the coronavirus disease 2019 (COVID- 19) pandemic, this is likely to become a major long-term burden for patients and health care systems. 5, 6 COVID-19 patients may be at high risk of PICS because they often spent a long time in intensive care and many receive extended mechanical ventilation, sedation combined with muscle relaxants, and prone positioning, all of which are known risk factors. 7, 8 Suffering from PICS affects independence, and return to daily life after severe illness, which results in an increased burden on both at-home caregivers and the health care system. [1] [2] [3] [4] Physical impairment, including reduced physical capacity and mobility, is common. 1, 9 Common psychological consequences are anxiety, depression, and post-traumatic stress symptoms. 1, 2 Fatigue occurs in as many as 50% of patients after intensive care. 10, 11 Cognitive impairment, such as reduced memory, executive function, attention, processing speed, or visuospatial ability, occurs in 30%-80% of patients. [1] [2] [3] 12 Recovery after PICS is individual and dependent on several factors, including age, length of ICU stay, and comorbidity; residual symptoms can persist for up to 8 years. 2, 3 The situation of patients hospitalized with COVID-19 shows similarities to PICS at two to six months' follow-up. 13, 14 There is a need to investigate if these remaining symptoms are also present in patients who have required intensive care for COVID-19 and to address their experiences. The aim of the present investigation was to describe how patients from the first wave perceived their COVID-19, their stay at an ICU, and remaining symptoms three to six months after intensive care. Prospective, descriptive study with a quantitative and qualitative approach. The study was approved by the Swedish Ethical Review Authority (EPM-2020-02697) and was performed in accordance with the declaration of Helsinki. Patients were included after giving informed consent. The study was registered à priori (ClinicalTrials ID: NCT04474249). The study was performed at a general ICU at a university hospital in Sweden, at the time treating only COVID-19 patients. Patients were eligible to participate in this follow-up study if they had previously been included in an ongoing research regarding the acute effects of COVID-19 (ClinicalTrials ID NCT04316884). During the period March 13-July 14 2020, i.e, first wave of COVID-19, a total of 123 patients were admitted for COVID-19 and included in the ongoging research. Between three to six months after discharge from the ICU, the patients were contacted and asked to participate in this followup study. Out of them (n = 123), three were excluded as they had not had COVID-19, 32 had died, 23 declined to participate or were lost to follow-up, and one did not return the questionnaire. This resulted in 64 patients being analyzed in this follow-up study. Data from patients were coded and anonymized. Patients were contacted by telephone and sent a questionnaire with structured questions concerning their perception of the hospital stay and their recovery after the COVID-19 infection. In Sweden, the ICU specialty is multidisciplinary, and the team caring for critically ill patients consists of specialist nurses, nurse assistants, specialist physicians, and physiotherapists. The treatment of COVID-19 patients was based on international and national recommendations and guidelines were continuously updated during the first wave. To meet an increased number of patients during the first wave of COVID-19, the specialist nurse-to-patient ratio and specialist physicians-to-patient ratio decreased, also temporary ICU beds Post-intensive care syndrome is common among ICU survivors. During the COVID-19 pandemic, this has also gained much public interest. To systematically report of this, and to analyze the effects of critical illness after discharge, is an important approach to try to improve care for ICU COVID-19 patients as well as for non-COVID-19 ICU patients. were opened. Professions from other areas, mainly anesthesia, were introduced to work in the ICU, who received a brief introduction to inpatient care in the ICU. Routines regarding visits and the possibility for relatives to be in touch with the ICU changed, as well as practices regarding diary and follow-up visits. At our hospital, one ICU unit was responsible for and admitted all COVID-19 patients. The current ICU included eight beds before the pandemic, and to meet the increased number of patients, temporary ICU beds were opened. During the peak of the first wave, 23 ICU beds were dedicated for COVID-19 patients (see also Table A1 ). The criteria for admittance to ICU during the first wave were based on the concept of potential benefit and did not differ compared to usual criteria for ICU care in Sweden. 15 Data from the open-ended questions Q1 and Q2, regarding memories of the illness and hospital stay, were analyzed using manifest content analysis, with an inductive approach that included open coding, creating categories, and abstraction. 16, 17 The answers consisted of a few words up to eight sentences and were read and re-read to get an overall sense of the material. NVivo software (Release 1.3.1, 2020, QSR International, Melbourne, Australia) was used to organize the data and derive codes. Thereafter, the codes were grouped into categories. The analysis was conducted by two authors (EW and IML) and discussed during the process. Data from the open-ended questions Q3, Q4 and Q13, and freetext comments Q5-Q12 were analyzed using quantitative content analysis. 17 Excel (Microsoft Corp., Seattle, WA, USA) was used to organize the data. The closed-ended questions, Q5-Q12, were processed using Excel and presented using descriptive statistics (frequencies and percentages). Demographic and clinical characteristics data are also presented using descriptive statistics (frequencies and percentages, median and interquartile range (IQR)). Data are presented as n (% of the whole cohort, N = 64). Sixty-four patients treated for COVID-19 during the first wave were included. Demographic and clinical characteristics and follow-up data for the patients are presented in Table 2 . The qualitative analysis generated three categories: Awareness of the illness, a feeling of lost connection to reality, and being cared for in a dynamic environment. Patients expressed awareness of their illness. Their perception of the illness became tangible when they experienced impaired health and understood that they required hospital care. Common expressions were feelings of fear, uncertainty, powerlessness, and anxiety, as well as fear of dying. The most frightening experiences were being in need of invasive ventilation and being anesthetized. The patients' memories of their ICU stay involved physical conditions, such as breathlessness, thirst, hunger, pain, and being unable to move or talk. A common memory was sleep disturbance and some had felt vulnerable. They also had memories of their recovery, such as when the ventilator was disconnected and when they were first able to sit on the edge of the bed. Later important memories were when supplemental oxygen could be removed and when they were able to set goals in their achieved recovery. A feeling of lost connection to reality was described in the form of fragmented memories when patients moved between a dream state and reality, with many days blending into one. Many patients had had dreams that they could describe in detail afterward. Some of the dreams were enjoyable; others were strange or like déjà vu. Patients described having frequent nightmares, even after the ICU stay. Hallucinations were described as frightening and realistic experiences. and they longed to go home. Being able to eat and take a shower was a positive memory and was described as giving a sense of slow recovery. Example quotations from the different categories are presented in Table 3 . The patients experienced a lack of information about their ICU stay and illness (48%, n = 31 (Q3) and 44%, n = 28 (Q4), respectively), and some patients could not remember any information that they received during or about their intensive care and illness. The patients who remembered getting information had received this from their family, the ICU diary, online access to their patient journal, and from staff, usually physicians. This information was focused on the ventilator treatment and the severity of the illness. Later, information on test results and examinations was given on daily basis. Twenty-one (33%) patients, with an ICU stay of 3-45 days ((median 19 (IQR 10-24))), received an ICU diary kept by staff during the stay, while those who did not receive a diary had an ICU stay of 2-30 days (median 9 (IQR 4-12)) (Q5). The diary was appreciated, and patients felt gratitude toward the staff for taking the time to keep a diary for them. Patients described that the diary helped them to understand their stay in ICU, and how seriously ill they had been. They also felt that the diary provided information they would otherwise have lacked, and it gave them an opportunity to reflect on their illness. Patients expressed understanding and respect for the visiting re- Relationships with relatives had changed for the better in some ways, meaning that the relationships had been strengthened. However, the patients also said that their relatives were anxious and overprotective and had opinions on their health. Some patients felt that they had become more selfish and withdrawn and had difficulties speaking about their illness. Furthermore, they were aware that = 54) of the patients. The number of remaining symptoms described by patients ranged between one and ten (Table 4 ). No differences in remaining symptoms were found with age, sex, length of ICU stay, invasive ventilation, or simplified acute physiology score-3 (SAPS3). Most of the patients, 76% (n = 49), felt that they had been able to resume daily life (Q11) ( Table 1 ). Answers to the last open-ended question about any additional thoughts they want to share (Q13) ( Table 1 ) concerned thoughts about the future, gratitude toward health care staff, and shortcomings that they had experienced during their hospital stay. Some additional remaining symptoms were mentioned-these are presented in Table 4 . The main result was that 84% stated that they had remaining symptoms such as fatigue and physical, psychological, or cognitive impairment at follow-up. Dependent on invasive ventilation and being anesthetized were common experiences. Awareness of their own health as well as other patients' health or death were described as strong memories; nightmares and hallucinations were also common memories from the ICU. Patients described memories of both real and surreal episodes and these memories were highly present in their consciousness after discharge from ICU. This is in line with previous studies describing the memories of ICU patients. [18] [19] [20] Several patients mentioned awareness of other patients' health, including perceiving that a patient died in a nearby bed. This was a frightening and uncomfortable experience. Among the patients in this study, 84% stated that they had remaining symptoms such as fatigue or physical, psychological, and cognitive impairment. The patients' descriptions of remaining symptoms can be compared with recently published data on COVID-19 patients. 13, 21 The proportion of patients with remaining symptoms in our study was slightly higher than in previous studies. One reason for this might be that our study reported data from intensive care patients and their burden of symptoms may be higher than that of patients who have not needed intensive care. The results from our study, together with prior studies on Covid-19 patients 13,21 illustrate similarities to previous studies on non-COVID-19 patients regarding symptoms of PICS, as physical, psychological, and cognitive impairment. [1] [2] [3] [4] The dominating symptoms, based on patients' descriptions of their experiences, in the present study were impaired strength and energy, both physically and mentally. Eight patients (13%) stated that they had no remaining symptoms, which is in line with previously presented data. 22 Many patients perceived that the information they received regarding their own illness was sparse and mainly of a medical nature. Patients expressed a desire to receive more information regarding them as a person. Given the increase in ICU capacity and the many temporary ICUs with high numbers of beds and low ICU nurse-topatient ratios, it can be assumed that writing a diary was not a priority. However, 33% of the studied patients had received a diary. The strengths of this study included the comprehensive descriptions given by former ICU patients treated for COVID-19, gathered using a questionnaire and person-centered approach. Improving long-term outcomes after discharge from intensive care unit: report from a stakeholders' conference Postintensive care syndrome: right care, right now and later Co-occurrence of post-intensive care syndrome problems among 406 survivors of critical illness Exploring the scope of post-intensive care syndrome therapy and care Post-intensive care syndrome and COVID-19 -Implications post pandemic Covid-19 and post intensive care syndrome: a call for action Risk factors associated with mortality among patients with COVID-19 in intensive care units in Lombardy, Italy Decline in mortality among hospitalised covid-19 patients in Sweden a nationwide observational study ICU-acquired weakness and recovery from critical illness Fatigue in intensive care survivors one year after discharge. Health Qual Life Outcomes Self-reported fatigue following intensive care of chronically critically ill patients: a prospective cohort study Long-term cognitive impairment after critical illness COVID-19 severity impacts on long-term neurological manifestation after hospitalisation. medRxiv Persistent symptoms in patients after acute COVID-19 Riktlinjer för svensk intensvvård The qualitative content analysis process Content analysis: an introduction to its methodology. SAGE Evaluating the past to improve the future -a qualitative study of ICU patients' experiences. Intensive Crit Care Nurs Patients' dreams and unreal experiences following intensive care unit admission Intrusive memories of hallucinations and delusions in traumatized intensive care patients: an interview study 6-month consequences of COVID-19 in patients discharged from hospital: a cohort study Prevalence of post-intensive care syndrome among Japanese intensive care unit patients: a prospective, multicenter, observational J-PICS study Quality of life, functional status, and persistent symptoms after intensive care of COVID-19 patients Long term outcomes of critically ill COVID-19 pneumonia patients: early learning The contents of a patient diary and its significance for persons cared for in an ICU: a qualitative study The impact of intensive care unit diaries on patients' and relatives' outcomes: a systematic review and meta-analysis. Crit Care The impact of follow-up visits and diaries on patient outcome after discharge from intensive care: a descriptive and explorative study Guidelines for familycentered care in the neonatal, pediatric, and adult ICU Flexible versus restrictive visiting policies in ICUs: a systematic review and meta-analysis The authors would like to thank the participants for sharing their experiences for this study, and research nurses for help with project and data organization. The authors have no conflict of interest. All authors contributed to the study design. The analysis process and the first draft of the manuscript were conducted by Wallin E and Larsson I-M. All authors contributed to the manuscript and approved the final manuscript.