Search

Lotti Orwelius,1-4 Armando Teixeira-Pinto,2,5 Cristina Lobo,2 Altamiro Costa-Pereira,1,2 Cristina Granja,1,2,6,7 1Department of Health Information and Decision Sciences, Faculty of Medicine of Porto, Porto, Portugal; 2CINTESIS – Centre for Research in Health Technologies and Health Systems, Faculty of Medicine of Porto, Porto, Portugal; 3Department of Intensive Care, Linköping University, County Council of Östergötland, Linköping, Sweden; 4Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden; 5Screening and Test Evaluation Program, Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; 6Department of Emergency and Intensive Care Medicine, Algarve Hospital Centre, Algarve, Portugal; 7Department of Biomedical Sciences and Medicine, University of Algarve, Algarve, Portugal Background: Decreased health-related quality of life (HRQoL) is a significant problem after an intensive care stay and is affected by several known factors such as age, sex, and previous health-state. The objective of this study was to assess the association between memory and self-reported perceived HRQoL of patients discharged from the intensive care unit (ICU). Methods: A prospective, multicenter study involving nine general ICUs in Portugal. All adult patients with a length of stay >48 hours were invited to participate in a 6-month follow-up after ICU discharge by answering a set of structured questionnaires, including EuroQol 5-Dimensions and ICU memory tool. Results: A total of 313 (52% of the eligible) patients agreed to enter the study. The median age of patients was 60 years old, 58% were males, the median Simplified Acute Physiology Score II (SAPS II) was 38, and the median length of stay was 8 days for ICU and 21 days for total hospital stay. Eighty-nine percent (n=276) of the admissions were emergencies. Seventy-eight percent (n=234) of the patients had memories associated with the ICU stay. Patients with no memories had 2.1 higher chances (P=0.011) of being in the bottom half of the HRQoL score (

Objectives: To find out how patients perceive their health-related quality of life after they have been treated in an intensive care unit and whether preexisting disease influenced their perception.Design: : Follow-up, quantitative, dual-site study.Setting: Combined medical and surgical intensive care units of one university and one general hospital in Sweden.Patients: Among the 1,938 patients admitted, 562 were considered eligible (>24 hrs in the intensive care unit, and age >18 yrs). The effect of preexisting disease was assessed by use of a large reference group, a random sample (n = 10,000) of the main intake area of the hospitals.Interventions: None.Measurements and Main Results: During 2000-2002, data were collected from the intensive care unit register and from a questionnaire mailed to the patients 6 months after their discharge from hospital. Subjects in the reference group were sent postal questionnaires during 1999. Of the patients in the intensive care unit group, 74% had preexisting diseases compared with 51% in the reference group. Six months after discharge, health-related quality of life was significantly lower among patients than in the reference group. When comparisons were restricted to the previously healthy people in both groups, the observed differences were about halved, and when we compared the patients in the intensive care unit who had preexisting diseases with subjects in the reference group who had similar diseases, we found little difference in perceived health-related quality of life. In some dimensions of health-related quality of life, we found no differences between patients in the intensive care unit and the subjects in the reference population.Conclusions: Preexisting diseases significantly affect the extent of the decline of health-related quality of life after critical care, and this effect may have been underestimated in the past. As most patients who are admitted to an intensive care unit have at least one preexisting disease, it is important to account for these effects when examining outcome. [ABSTRACT FROM AUTHOR]

Background: Evidence about rehabilitation of post COVID-19 condition is scarce. Yoga has been found beneficial in other chronic conditions and can be delivered in a digital format at home. The aim of the study was to explore the feasibility of teleyoga in persons with post COVID-19 condition by assessing adherence, safety, limited efficacy and experiences., Methods: Pre-post mixed-method design. Participants were recruited from a post COVID-19 rehabilitation clinic. The intervention included standardised live-streamed teleyoga sessions twice/week for 7 weeks and individual yoga using a digital application during 12 weeks. Adherence to the teleyoga intervention was measured by registration of participation and by analysing the log in the application. Safety was measured by registration of serious adverse events. Limited efficacy examined trends in the predicted direction for better outcome in patients with a post-COVID condition in the 6-minute walk test, gait speed, cognition, health-related quality-of-life, mental distress, sleep and exercise motivation. We also assessed patients' experiences after the intervention., Results: Nine women and 2 men were enrolled, aged between 27 and 61 years, and duration of post COVID-19 3-12 months. Adherence: Half of the participants participated in more than 50% of the online yoga sessions. They enjoyed the digital format and the social aspect of the online yoga sessions. Some participants experienced that the yoga sessions of 60 min were too long. People with post COVID-19 felt motivated to participate, however they felt conflicted when other commitments took time away from yoga. Adherence to the yoga application varied, 6 patients used it less than 50% of the recommended time., Safety: Persons with post COVID-19 experienced symptoms due to their disease, which could increase during the yoga sessions that made it harder to participate. There were no reported serious adverse events. Limited efficacy: Participants expressed that they breathed more consciously and experienced relaxation and reduction of stress and anxiety. After 7 weeks of teleyoga there was a significant improvement in cognitive function (p-value = 0.048). No differences were found in the physical tests, health-related quality-of-life, anxiety and depression, sleep or in exercise motivation., Conclusion: Adherence to the online yoga sessions was quite low and might be improved with shorter yoga sessions. Online yoga was safe, but some participants experienced an increase in symptoms. Teleyoga was associated with improved cognition, breathing and relaxation. The results show that online yoga could be feasible for people post COVID-19, but adaptation of the yoga-program may be required, especially as many patients experience an increase of symptoms. Furthermore, the teleyoga should be more flexible with regards to the duration and the number of sessions. As few participants were adherent to the application, the relevance and usefulness of this needs to be further explored., Competing Interests: Declarations. Ethical approval and consent to participate: Eligible participants were informed written and verbally and invited to participate by the staff at the rehabilitation clinic and all included participants signed informed consent. The participants were able to terminate their participation at any time. The study was approved by The Ethical committee of Linköping (Dnr 2017/225-3, Dnr 2020–04891). Consent for publication: Not applicable’ in the declarations section. Competing interests: The authors declare no competing interests., (© 2024. The Author(s).)

Purpose: To examine patients' experiences of receiving care on an ICU for COVID-19 and the subsequent rehabilitation process., Methods: An explorative and inductive design was used. Participants were recruited from two university hospitals in Sweden. Patients admitted to the ICU due to COVID-19 from March 2020 to April 2021, who enrolled in the ICU follow-up, and understood and spoke Swedish were invited to participate. In total, 20 participants completed a semi-structured interview, of whom 18 were included in the thematic analysis., Results: The analysis resulted in two themes: "An isolated world with silver linings" and "Recovery in the wake of the pandemic". Findings show that patients cared for on an ICU for COVID-19 during the pandemic felt safe but experienced a sense of vulnerability. After discharge, physical rehabilitation was a slow process with frustrating day-to-day fluctuations. Mentally, participants felt isolated, fatigued, and emotionally sensitive. Patients reported that love and support from family and friends were crucial for the recovery process., Conclusions: This study highlights the challenges of recovering from COVID-19, emphasizing the importance of continued support from health care, public services, family and friends. It provides important insights into patients' experiences and can inform future healthcare strategies and policies.

Background: Health-related quality of life (HRQoL) is one of the most important outcome variables for assessing the effectiveness of intensive care, together with mortality and survival, where comorbidity is suggested to have high impact. However, studies are lacking that examine to what extent HRQoL is affected after a general ICU period, beyond that of the effects that may be claimed to be due to comorbidities., Design: Purpose-specific literature review including literature searches in PubMed, Cinahl, Scopus, and Cochrane library between 2010 and 2021., Measurements and Results: This Purpose-specific, i.e., task focused review examines HRQoL (assessed by either SF-36 or EQ-5D, > 30 days after leaving the hospital) in adult patients (≥ 18 years) having an ICU length of stay > 24 h. Further, the HRQoL comparisons were adjusted for age or comorbidity. A total of 11 publications were found. A majority comprised observational, prospective cohort studies, except three that were either case-control, cross-sectional comparison, or retrospective cohort studies. A total of 18,566 critically ill patients were included, and the response rate ranged from 16 to 94%. In all studies, a recurrent relevant finding was that HRQoL after ICU care was affected by pre-ICU comorbidities. In three studies (n = 3), which included a comorbidity adjusted control group, there were no effect of the critical care period itself on the registered HRQoL after the critical care period., Conclusion: Health-Related Quality of Life (HRQoL) in former ICU patients appears to be primarily influenced by comorbidity. A notable limitation in this field of research is the high heterogeneity observed in the studies reviewed, particularly in terms of the HRQoL measurement tool employed, the duration of follow-up, the methodology for comorbidity assessment, and the adjustments for age and sex. Despite these variations and the limited number of studies in the review, the findings suggest a minimal HRQoL impact beyond the effects of comorbidity. Given the significant dearth of comprehensive studies in this domain, there is an escalating call for more thorough and detailed research endeavours., (© 2024. The Author(s).)

Purpose: The aim of this study was to examine relationships between education, income, and employment (socioeconomic status, SES) and intensive care unit (ICU) survival and survival 1 year after discharge from ICU (Post-ICU survival)., Methods: Individual data from ICU patients were linked to register data of education level, disposable income, employment status, civil status, foreign background, comorbidities, and vital status. Associations between SES, ICU survival and 1-year post-ICU survival was analysed using Cox's regression., Results: We included 58,279 adults (59% men, median length of stay in ICU 4.0 days, median SAPS3 score 61). Survival rates at discharge from ICU and one year after discharge were 88% and 63%, respectively. Risk of ICU death (Hazard ratios, HR) was significantly higher in unemployed and retired compared to patients who worked prior to admission (1.20; 95% CI: 1.10-1.30 and 1.15; (1.07-1.24), respectively. There was no consistent association between education, income and ICU death. Risk of post-ICU death decreased with greater income and was roughly 16% lower in the highest compared to lowest income quintile (HR 0.84; 0.79-0.88). Higher education levels appeared to be associated with reduced risk of death during the first year after ICU discharge., Conclusions: Significant relationships between low SES in the critically ill and increased risk of death indicate that it is important to identify and support patients with low SES to improve survival after intensive care. Studies of survival after critical illness need to account for participants SES., Competing Interests: Declaration of Competing Interest None of the co-authors have any financial interests to disclose., (Copyright © 2023 Elsevier Inc. All rights reserved.)

In survivors of severe coronavirus disease 2019 (COVID-19) incomplete mental and physical recovery may considerably impact daily activities and health-related quality of life (HRQoL). HRQoL can be evaluated with the RAND-36 questionnaire, a multidimensional instrument that assesses physical and mental aspects of health in eight dimensions. The objective was to investigate HRQoL in intensive care patients previously treated for COVID-19 at three Nordic university hospitals, in a prospective multi-center cohort study. HRQoL was measured using RAND-36, 3-9 months after discharge from intensive care units (ICU). One hospital performed a second follow-up 12 months after discharge. A score under the lower limit of the 95% confidence interval in the reference cohorts was considered as significantly reduced HRQoL. We screened 542 and included 252 patients. There was more than twice as many male (174) as female (78) patients and the median age was 61 (interquartile range, IQR 52-69) years. Hypertension was the most common comorbidity observed in 132 (52%) patients and 121 (48%) patients were mechanically ventilated for a median of 8 (IQR 4-14) days. In RAND-36 physical functioning, physical role functioning, general health (p < 0.001 for all) and social functioning (p < 0.05) were below reference, whereas bodily pain, emotional role functioning and mental health were not. In a time-to-event analysis female sex was associated with a decreased chance of reaching the reference HRQoL in the physical function, bodily pain and mental health dimensions. Higher body mass index was found in the physical functioning dimension and hypertension in the physical functioning, vitality and social functioning dimensions. Similar results were seen for diabetes mellitus in general health, vitality and mental health dimensions, as well as pulmonary illness in the physical role functioning dimension and psychiatric diagnosis in the social functioning dimension. Mechanical ventilation was associated with a decreased likelihood of achieving reference HRQoL in the bodily pain and physical functioning dimensions. Patients treated in an ICU because of COVID-19 had lower HRQoL 3-9 months after ICU discharge than 95% of the general population. Physical dimensions were more severely affected than mental dimensions. Female sex and several comorbidities were associated with a slower rate of recovery.Study registration: clinicaltrials.gov: NCT04316884 registered on the 13th of March 2020, NCT04474249 registered on the 29th of June 2020 and NCT04864938 registered on the 4th of April 2021., (© 2023. Springer Nature Limited.)

Background: Yoga is a mind-body exercise that has demonstrated its feasibility and safety even for individuals with severe long-term illness. Engaging in yoga has the potential to yield positive effects on both physical and mental well-being. Tele-yoga is a novel approach to rehabilitation in which participants practice group yoga with a live-streamed yoga instructor digitally via a tablet. This is especially beneficial for individuals who may find it difficult to leave their homes to participate in an exercise session. As part of our ongoing evaluation of the tele-yoga intervention in individuals with long-term illness, we have undertaken an exploration of participants' expectations regarding yoga in general and tele-yoga specifically. Understanding these expectations is crucial, as they can significantly impact their satisfaction with treatment and care and influence overall intervention outcomes., Objective: This study aims to explore the expectations of tele-yoga among individuals with long-term illness before starting a tele-yoga intervention., Methods: The study employed an inductive qualitative design and is part of a process evaluation within an ongoing randomized controlled trial. A total of 89 participants were interviewed before the start of the tele-yoga intervention. The interview guide encompassed questions about their general perceptions of yoga and the specific expectations they held for the upcoming tele-yoga sessions. The interviews were transcribed and analyzed using inductive qualitative content analysis., Results: Participants expressed their expectations for tele-yoga, focusing on the anticipated improvements in physical function and overall health. These expectations included hopes for reduced respiratory issues; relief from discomfort, aches, and pains; as well as increased physical flexibility, coordination, and overall well-being. Besides, they expected to achieve improved psychological well-being and performance; to acquire strategies to manage stress, anger, and anxiety; and to have their motivational drive strengthened and influence other activities. Participants described tele-yoga as a new and exciting technical solution that would facilitate the delivery of yoga. A few participants remained a little hesitant toward the use of technology, with some expectations based on previous experiences. When asked about expectations, some had no idea about what to expect. Participants also had varying perspectives on yoga, with some finding it mysterious and difficult to understand. Participants expressed thoughts that they found the idea of tele-yoga taking place in groups exciting and enjoyable. They also had expectations that being part of a group would provide opportunities for mutual inspiration and encouragement among the group members., Conclusions: Expectations before an intervention can provide valuable insights into understanding the factors influencing adherence to tele-yoga and its outcomes. Our findings provide a wide range of expectations for tele-yoga, spanning both physical and mental aspects. Moreover, the technology's potential to facilitate yoga delivery and the supportive nature of digital group interactions were evident from the results., Trial Registration: ClinicalTrials.gov NCT03703609; https://clinicaltrials.gov/ct2/show/NCT03703609., (©Towe Hedbom, Maria Liljeroos, Ingela Thylén, Lotti Orwelius, Tiny Jaarsma, Anna Strömberg. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 13.09.2023.)

Background: For people with long-term illness, debilitated by severe symptoms, it can be difficult to attend regular yoga classes. We have therefore developed a tele-health format of yoga that can be delivered in the home. The tele-yoga was co-designed with members of a patient-organisation, yoga-instructor, and IT-technician. It includes live-streamed group-yoga sessions twice a week and an app with instructions on how to self-perform yoga., Aim: To describe a study protocol for a randomised controlled trial (RCT) including a process evaluation and report on a pilot study evaluating method- and intervention-related components including feasibility, safety, and efficacy., Methods: Ten participants with heart failure aged between 41-76 years were randomised to tele-yoga ( n = 5) or to the control group ( n = 5). In the pilot study recruitment, enrolment, randomisation, and data collection of all outcomes including primary, secondary and process evaluation measures were tested according to the study protocol. Fidelity, adherence and acceptability to the tele-yoga group training and app use was determined. Safety was assessed by adverse events., Results: The pilot revealed that the methodological aspect of the protocol worked sufficiently in all aspects except for missing data in the physical test of two participants and one participant in the control-group that dropped out of the study at three months follow-up. The tele-yoga training did not lead to any adverse events or injuries, adherence of tele-yoga was sufficient according to preset limits. The tele-yoga intervention also showed some favourable trends of improvements in the composite-end point compared to the active control group. However, since data only was presented descriptively due to the small sample size, the impact of these trends should be interpreted carefully., Conclusion: Our pilot study showed promising results in feasibility, safety, and acceptability of the tele-yoga intervention. Some changes in the protocol have been made to decrease the risk of missing data in the measures of physical function and in the full-scale RCT now ongoing the results of the sample size calculation for 300 participants have included the estimated level of drop outs and missing data.

Purpose: The aim of this study was to evaluate the usefulness of EQ-5D as a patient-reported outcome measure using different analytical methods. Especially we used the Paretian Classification of Health Change, to see if this gave better information compared to measures that are more traditional. For the evaluation we used data from patients with chronic heart failure (HF)., Methods: We compared results of EQ-5D at baseline and at 1 year's follow up for HF patients with preserved or reduced ejection fraction (EF), HFpEF (EF > 50%, n = 930) and HFrEF (EF < 40%, n = 3831) using individual patient data from the Swedish Heart Failure Registry. Statistical analysis included EQ-5D index and proportions for all five dimensions of the EQ-5D. In addition, we also used the Paretian classification of Health Change to judge overall improvements (improved in at least one dimension and not worsened in any other dimension) or worsening (vice versa) in EQ-5D profiles., Results: Mean EQ-5D index showed minor changes at the one-year follow-up, likewise in both groups. The proportions reporting moderate, or severe, problems increased for all five dimensions of the EQ-5D in the HFpEF group. In the HFrEF group this was seen only for three dimensions, with no change for "anxiety/depression" and reduction of problems for "usual activities ". The Paretian classification showed that 24% (n = 200) of the HFpEF group and 34% (n = 1059) of the HFrEF group reported overall improvement while 43% (n = 355) and 39% (n = 1212) respectively reported overall worsening. Multiple logistic regressions showed different patterns of determinants e.g. that treatment in a cardiology clinic only affected overall health outcome in the HFrEF group., Conclusion: The usefulness of EQ-5D is dependent on the analytical method used. While the index showed minor differences between groups, analyses of specific dimensions showed different patterns of change in the two groups with better prognosis for the HFrEF group. The Paretian classification of Health Change could further identify subgroups that showed overall improvements or overall worsening. This method can therefore help to identify needs for more tailored interventions in health services.

Background: Burden of disease estimates are an important resource in public health. Currently, robust estimates are not available for the burn population. Our objectives are to adapt a refined methodology (INTEGRIS method) to burns and to apply this new INTEGRIS-burns method to estimate, and compare, the burden of disease of burn injuries in Australia, New Zealand and the Netherlands., Methods: Existing European and Western-Australian health-related quality of life (HRQL) datasets were combined to derive disability weights for three homogenous burn injury groups based on percentage total body surface area (%TBSA) burned. Subsequently, incidence data from Australia, New Zealand, and the Netherlands from 2010 to 2017 were used to compute annual non-fatal burden of disease estimates for each of these three countries. Non-fatal burden of disease was measured by years lived with disability (YLD)., Results: The combined dataset included 7159 HRQL (EQ-5D-3 L) outcomes from 3401 patients. Disability weights ranged from 0.046 (subgroup < 5% TBSA burned > 24 months post-burn) to 0.497 (subgroup > 20% TBSA burned 0-1 months post-burn). In 2017 the non-fatal burden of disease of burns for the three countries (YLDs/100,000 inhabitants) was 281 for Australia, 279 for New Zealand and 133 for the Netherlands., Conclusions: This project established a method for more precise estimates of the YLDs of burns, as it is the only method adapted to the nature of burn injuries and their recovery. Compared to previous used methods, the INTEGRIS-burns method includes improved disability weights based on severity categorization of burn patients; a better substantiated proportion of patients with lifelong disability based; and, the application of burn specific recovery timeframes. Information derived from the adapted method can be used as input for health decision making at both the national and international level. Future studies should investigate whether the application is valid in low- and middle- income countries.

Background: A prominent outcome measure within burn care is health related quality of life (HRQL). Until now, no model for long-term recovery of HRQL exists for adult burn patients which requires large samples with repeated measurements. Re-use and the combination of existing data is a way to achieve larger data samples that enable the estimation of long-term recovery models. The aim of this secondary data analysis was to assess the recovery of HRQL after a burn injury over time., Methods and Findings: Data from ten European studies on generic HRQL assessed in adult burn patients (either with the EQ-5D or SF-36) from five different countries were merged into one dataset. SF-36 outcomes were transformed into EQ-5D outcomes. A 24-month recovery of HRQL (EQ-5D utility) was modeled using a linear mixed-effects model and adjusted for important patient and burn characteristics. Subgroups of patients with mild and intermediate burns (≤20% total body surface area (TBSA) burned) and with major burns (>20% TBSA burned) were compared. The combined database included 1687 patients with a mean age of 43 (SD 15) years and a median %TBSA burned of 9% (IQR 4-18). There was large improvement in HRQL up to six months after burns, and HRQL remained relatively stable afterwards (studied up to 24 months post burn). However, the estimated EQ-5D utility scores remained below the norm scores of the general population. In this large sample, females, patients with a long hospital stay and patients with major burns had a delayed and worse recovery. The proportion of patients that reported problems for the EQ-5D dimensions ranged from 100% (pain/discomfort at baseline in patients with major burns) to 10% (self-care ≥3 months after injury in patients with mild and intermediate burns). After 24 months, both subgroups of burn patients did not reach the level of the general population in the dimensions pain/discomfort and anxiety/depression, and patients with major burns in the dimension usual activities. A main limitation of the study includes that the variables in the model were limited to age, gender, %TBSA, LOS and time since burn as these were the only variables available in all datasets., Conclusions: The 24-month recovery model can be used in clinical practice to inform patients on expected HRQL outcomes and provide clinicians insights into the expected recovery of HRQL. In this way, a delayed recovery can be recognized in an early stage and timely interventions can be started in order to improve patient outcomes. However, external validation of the developed model is needed before implementation into clinical practice. Furthermore, our study showed the benefit of secondary data usage within the field of burns., Competing Interests: The authors have declared that no competing interests exist.

Objective: A history of psychiatric disorders is more common among patients who have had burns than in the general population. To try and find out the scale of the problem we have assessed self-reported symptoms of anxiety and depression after a burn., Methods: Consecutive patients with burns measuring more than 10% total body surface area or duration of stay in hospital of seven days or more were included. Personal and clinical details about the patients were extracted from the database at each center. Data were collected from the Hospital Anxiety and Depression Scale, as well as Health-Related Quality of Life (HRQoL; Short Form-36, SF-36) and questionnaires about socioeconomic factors. All results were obtained 12 and 24 months after the burn, and compared with those from a reference group., Results: A total of 156 patients responded to the questionnaires. Mean (SD) age and TBSA (%) were 46 (16.4) years and 23.6 (19.2) %, respectively. There were no differences in incidence between the burn and reference groups in anxiety or depression either 12 or 24 months after the burn. Those who reported higher anxiety and depression scores also had consistently poorer HRQoL as assessed by the SF-36., Conclusion: Seen as a group, people who have had burns report anxiety and depression the same range as a reference group. Some patients, however, express more anxiety and depression, and concomitantly poorer HRQoL. These patients should be identified, and offered additional support., (Copyright © 2019 Elsevier Ltd and ISBI. All rights reserved.)

Background :Trauma patients experience morbidity related to disability and cognitive impairment that negatively impact their health-related quality of life (HRQoL). We assessed the impact of trauma on disability, cognitive impairment and HRQoL after intensive care in patients with and without traumatic brain injury (TBI) and created a predictive score to identify patients with worse outcome. Methods :We identified 262 patients with severe trauma (ISS>15) admitted to the emergency room of a level 1 trauma center. Patients above 13 years were included. After 6 months, patients were assessed for disability, cognitive impairment, and HRQoL. A global health outcome score after trauma (GHOST) was obtained through the combination of these domains. Logistic regression analysis was considered for the effect of demographic, trauma and hospital factors on global outcome. p > 0.05. Statistics performed with SPSS 23.0. Results :Patients with the worst outcomes were older and had a longer length of Intensive Care Unit (ICU) stay. The effect of gender was found in all "GHOST dimensions". TBI was not significantly associated with worse outcome. Conclusions :No significant differences were seen on disability, cognitive impairment and decreased HRQoL in patients with or without TBI. Our GHOST score showed that female gender, older age, and longer ICU stay were significantly associated with the worst outcome. Abbreviations: AIS: Abbreviated Injury Scale; EQ-5D: EuroQol 5-dimensions; EQ-5D-3L: EuroQol 5-dimensions 3-levels; GCS: Glasgow Coma Scale; GOSE: Glasgow Outcome Scale Extended; HRQoL: Health-Related Quality of Life; ICU: Intensive Care Unit; ISS: Injury Severity Score; MMS: Mini Mental State; NICE: National Institute for Health and Care Excellence; RTS: Revised Trauma Score; TBI: Traumatic brain injury; TRISS: Trauma Injury Severity Score; VAS: Visual Analogue Scale.

Purpose: To assess the independent associations between ability to cope and hopelessness with measures of health-related quality of life (HRQoL) and their effects on mortality up to 3 years after discharge in patients who have been treated in an intensive care unit (ICU)., Methods: A prospective, cross-sectional multicenter study of 980 patients. Ability to cope, hopelessness, and HRQoL were evaluated using validated scales. Questionnaires were sent to patients 6, 12, 24, and 36 months after discharge from ICU., Results: After adjustment, low scores for ability to cope and high scores for hopelessness were both related to poorer HRQoL for all subscales (except for coping with bodily pain). Effects were in the same range as coexisting disease for physical subscales, and stronger for social and mental subscales. High scores for hopelessness also predicted mortality up to 3 years after discharge from ICU (p<0.001)., Conclusions: The psychological factors ability to cope and hopelessness both strongly affected HRQoL after ICU care, and this effect was stronger than the effects of coexisting disease. Hopelessness also predicted mortality after critical illness. Awareness of the psychological state of patients after a stay in ICU is important to identify which of them are at risk., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Background: The Short Form 36-Item Survey is one of the most commonly used instruments for assessing health-related quality of life. Two identical versions of the original instrument are currently available: the public domain, license free RAND-36 and the commercial SF-36.RAND-36 is not available in Swedish. The purpose of this study was threefold: to translate and culturally adapt the RAND-36 into Swedish; to evaluate its reliability and responsiveness using Svensson's method for paired ordered categorical data; and to assess the usability of an electronic version of the questionnaire.The translation process included forward and backward translations and reconciliation. Test-retest reliability was examined during a period of two-weeks in 84 patients undergoing dialysis for chronic kidney disease. Responsiveness was examined in 97 patients before and 2 months after a cardiac rehabilitation program. Usability tests and cognitive debriefing of the electronic questionnaire were carried out with 18 patients., Results: The Swedish translation of the RAND-36 was conceptually equivalent to the English version. Test-retest reliability was supported by non-significant relative position (RP) values among dialysis patients for all RAND-36 subscales (range - 0.02 to 0.10; all confidence intervals (CI) included zero). Responsiveness was demonstrated by significant improvements in RP values among cardiac rehabilitation patients for all subscales (range 0.22-0.36; lower limits of all CI > 0.1) except two subscales (General health, RP -0.02; CI -0.13 to 0.10; and Role functioning/emotional, RP 0.03; CI -0.09 to 0.16). In cardiac rehabilitation patients, sizable individual variation (RV > 0.2) was also shown for the Pain, Energy/fatigue and Social functioning subscales.The electronic version of RAND-36 was found easy and intuitive to use., Conclusions: Our results provide evidence supporting the reliability and responsiveness of the newly translated Swedish RAND-36 and the user-friendliness of the electronic version. Svensson's method for paired ordinal data was able to characterize not only the direction and size of differences among the patients' responses at different time points but also variations in response patterns within groups. The method is therefore, besides being suitable for ordinal data, also an important and novel tool for gaining insights into patients' response patterns to treatment or interventions, thus informing individualized care., Competing Interests: The study was conducted in accordance with the Declaration of Helsinki and the Regional Ethical Review Board at the Faculty of Health Sciences, Linköping, Sweden approved the protocol (Reference: 2012/348–31(2012–11-14) for the paper version and 2015/226/32 for the electronic version).Informed consent was obtained from all participants.The authors declare that they have no competing interests.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Introduction: Health-related quality of life (HRQoL) in patients treated in intensive care has been reported to be lower compared with age- and sex-adjusted control groups. Our aim was to test whether stratifying for coexisting conditions would reduce observed differences in HRQoL between patients treated in the ICU and a control group from the normal population. We also wanted to characterize the ICU patients with the lowest HRQoL within these strata., Methods: We did a cross-sectional comparison of scores of the short-form health survey (SF-36) questionnaire in a multicenter study of patients treated in the ICU (n = 780) and those from a local public health survey (n = 6,093). Analyses were in both groups adjusted for age and sex, and data stratified for coexisting conditions. Within each stratum, patients with low scores (below -2 SD of the control group) were identified and characterized., Results: After adjustment, there were minor and insignificant differences in mean SF-36 scores between patients and controls. Eight (n = 18) and 22% (n = 51) of the patients had low scores (-2 SD of the control group) in the physical and mental dimensions of SF-36, respectively. Patients with low scores were usually male, single, on sick leave before admission to critical care, and survived a shorter time after being in ICU., Conclusions: After adjusting for age, sex, and coexisting conditions, mean HRQoL scores were almost equal in patients and controls. Up to 22% (n = 51) of the patients had, however, a poor quality of life as compared with the controls (-2 SD). This group, which more often consisted of single men, individuals who were on sick leave before admission to the ICU, had an increased mortality after ICU. This group should be a target for future support.

Introduction: Mortality amongst COPD patients treated on the ICU is high. Health-related quality of life (HRQL) after intensive care is a relevant concern for COPD patients, their families and providers of health care. Still, there are few HRQL studies after intensive care of this patient group. Our hypothesis was that HRQL of COPD patients treated on the ICU declines rapidly with time., Methods: Fifty-one COPD patients (COPD-ICU group) with an ICU stay longer than 24 hours received a questionnaire at 6, 12 and 24 months after discharge from ICU. HRQL was measured using two generic instruments: the EuroQoL instrument (EQ-5D and EQ-VAS) and the Short Form 36 Health Survey (SF-36). The results were compared to HRQL of two reference groups from the general population; an age- and sex-adjusted reference population (Non-COPD reference) and a reference group with COPD (COPD reference)., Results: HRQL of the COPD-ICU group at 6 months after discharge from ICU was lower compared to the COPD reference group: Median EQ-5D was 0.66 vs. 0.73, P = 0.08 and median EQ-VAS was 50 vs.55, P < 0.05. There were no significant differences in the SF-36 dimensions between the COPD-ICU and COPD-reference groups, although the difference in physical functioning (PF) approached statistical significance (P = 0.059). Patients in the COPD-ICU group who were lost to follow-up after 6 months had low HRQL scores at 6 months. Scores for patients who died were generally lower compared to patients who failed to respond to the questionnaire. The PF and social functioning (SF) scores in those who died were significantly lower compared to patients with a complete follow up. HRQL of patients in the COPD-ICU group that survived a complete 24 months follow up was low but stable with no statistically significant decline from 6 to 24 months after ICU discharge. Their HRQL at 24 months was not significantly different from HRQL in the COPD reference group., Conclusions: HRQL in COPD survivors after intensive care was low but did not decline from 6 to 24 months after discharge from ICU. Furthermore, HRQL at 24 months was similar to patients with COPD who had not received ICU treatment.

Objectives: To examine to what extent availability of social integration affects health-related quality of life (HRQoL) in former intensive care unit (ICU) patients and how it relates to corresponding findings in a general reference group., Design: Controlled, multicenter, prospective, explorative study., Setting and Patients: HRQoL data (SF-36) were collected from three combined medical and surgical ICUs in the south-east of Sweden. Social integration was assessed by the Availability of Social Integration (AVSI) instrument (seven questions related to the social interaction of the patient). As reference group, a random sample (n = 6,093) of people from the uptake area of the hospitals was used. Social integration (AVSI), HRQoL (SF-36), and comorbidity were examined also in the reference group., Interventions: None., Measurements and Results: The level of social integration significantly affected HRQoL for the former ICU patients, whereas no such effect was seen for the general reference group. For the ICU patients, social integration affected HRQoL to a larger extent than age, sex, and the ICU-related factors examined, but to a lower extent than the pre-existing diseases., Conclusions: For a comprehensive assessment of HRQoL in former ICU patients, it is mandatory to include the effect of social integration.

Introduction: The aim of the present multicenter study was to assess long term (36 months) health related quality of life in patients after critical illness, compare ICU survivors health related quality of life to that of the general population and examine the impact of pre-existing disease and factors related to ICU care on health related quality of life., Methods: Prospective, longitudinal, multicentre trial in three combined medical and surgical intensive care units of one university and two general hospitals in Sweden. By mailed questionnaires, health related quality of life was assessed at 6, 12, 24 and 36 months after the stay in ICU by EQ-5D and SF-36, and information of pre-existing disease was collected at the 6 months measure. ICU related factors were obtained from the local ICU database. Comorbidity and health related quality of life (EQ-5D; SF-36) was examined in the reference group. Among the 5306 patients admitted, 1663 were considered eligible (>24 hrs in the intensive care unit, and age >or= 18 yrs, and alive 6 months after discharge). At the 6 month measure 980 (59%) patients answered the questionnaire. Of these 739 (75%) also answered at 12 month, 595 (61%) at 24 month, and 478 (47%) answered at the 36 month measure. As reference group, a random sample (n = 6093) of people from the uptake area of the hospitals were used in which concurrent disease was assessed and adjusted for., Results: Only small improvements were recorded in health related quality of life up to 36 months after ICU admission. The majority of the reduction in health related quality of life after care in the ICU was related to the health related quality of life effects of pre-existing diseases. No significant effect on the long-term health related quality of life by any of the ICU-related factors was discernible., Conclusions: A large proportion of the reduction in the health related quality of life after being in the ICU is attributable to pre-existing disease. The importance of the effect of pre-existing disease is further supported by the small, long term increment in the health related quality of life after treatment in the ICU. The reliability of the conclusions is supported by the size of the study populations and the long follow-up period.