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Background: There is growing interest in health related quality of life (HRQoL) as an outcome measure in international trials. However, there might be differences in the conceptualization of HRQoL across different socio-cultural groups. The objectives of current study were: (I) to compare HRQoL, measured with the short form (SF)-36 of Dutch and Chinese traumatic brain injury (TBI) patients 1 year after injury and; (II) to assess whether differences in SF-36 profiles could be explained by cultural differences in HRQoL conceptualization. TBI patients are of particular interest because this is an important cause of diverse impairments and disabilities in functional, physical, emotional, cognitive, and social domains that may drastically reduce HRQoL.Methods: A prospective cohort study on adult TBI patients in the Netherlands (RUBICS) and a retrospective cohort study in China were used to compare HRQoL 1 year post-injury. Differences on subscales were assessed with the Mann-Whitney U-test. The internal consistency, interscale correlations, item-internal consistency and item-discriminate validity of Dutch and Chinese SF-36 profiles were examined. Confirmatory factor analysis was performed to assess whether Dutch and Chinese data fitted the SF-36 two factor-model (physical and mental construct).Results: Four hundred forty seven Dutch and 173 Chinese TBI patients were included. Dutch patients obtained significantly higher scores on role limitations due to emotional problems (p < .001) and general health (p < .001), while Chinese patients obtained significantly higher scores on physical functioning (p < .001) and bodily pain (p = .001). Scores on these subscales were not explained by cultural differences in conceptualization, since item- and scale statistics were all sufficient. However, differences among Dutch and Chinese patients were found in the conceptualization of the domains vitality, mental health and social functioning.Conclusions: One year after TBI, Dutch and Chinese patients reported a different pattern of HRQoL. Further, there might be cultural differences in the conceptualization of some of the SF-36 subscales, which has implications for outcome evaluation in multi-national trials. [ABSTRACT FROM AUTHOR]

Background: Insight into the change from pre- to post-injury health-related quality of life (HRQL) of trauma patients is important to derive estimates of the impact of injury on HRQL. Prospectively collected pre-injury HRQL data are, however, often not available due to the difficulty to collect these data before the injury. We performed a systematic review on the current methods used to assess pre-injury health status and to estimate the change from pre- to post-injury HRQL due to an injury. Methods: A systematic literature search was conducted in EMBASE, MEDLINE, and other databases. We identified studies that reported on the pre-injury HRQL of trauma patients. Articles were collated by type of injury and HRQL instrument used. Reported pre-injury HRQL scores were compared with general age- and gender-adjusted norms for the EQ-5D, SF-36, and SF-12. Results: We retrieved results from 31 eligible studies, described in 41 publications. All but two studies used retrospective assessment and asked patients to recall their pre-injury HRQL, showing widely varying timings of assessments (soon after injury up to years after injury). These studies commonly applied the SF-36 (n = 13), EQ-5D (n = 9), or SF-12 (n = 3) using questionnaires (n = 14) or face-to-face interviews (n = 11). Two studies reported prospective pre-injury assessment, based on prospective longitudinal cohort studies from a sample of initially non-injured patients, and applied questionnaires using the SF-36 or SF-12. The recalled pre-injury HRQL scores of injury patients consistently exceeded age- and sex-adjusted population norms, except in a limited number of studies on injury types of higher severity (e.g., traumatic brain injury and hip fractures). All studies reported reduced post-injury HRQL compared to pre-injury HRQL. Both prospective studies reported that patients had recovered to their pre-injury levels of physical and mental health, while in all but one retrospective study patients did not regain the reported pre-injury levels of HRQL, even years after injury. Conclusions: So far, primarily retrospective research has been conducted to assess pre-injury HRQL. This research shows consistently higher pre-injury HRQL scores than population norms and a recovery that lags behind that of prospective assessments, implying a systematic overestimation of the change in HRQL from pre- to post-injury due to an injury. More prospective research is necessary to examine the effect of recall bias and response shift. Researchers should be aware of the bias that may arise when pre-injury HRQL is assessed retrospectively or when population norms are applied, and should use prospectively derived HRQL scores wherever possible to estimate the impact of injury on HRQL. [ABSTRACT FROM AUTHOR]

Background: Many major causes of disability in the Global Burden of Disease (GBD) study present with a range of severity, and for most causes finding population distributions of severity can be difficult due to issues of sparse data, inconsistent measurement, and need to account for comorbidities. We developed an indirect approach to obtain severity distributions empirically from survey data. Methods: Individual-level data were used from three large population surveys from the US and Australia that included self-reported prevalence of major diseases and injuries as well as generic health status assessments using the 12-Item Short Form Health Survey (SF-12). We developed a mapping function from SF-12 scores to GBD disability weights. Mapped scores for each individual respondent were regressed against the reported diseases and injuries using a mixed-effects model with a logit-transformed response variable. The regression outputs were used to predict comorbidity-corrected health-state weights for the group of individuals with each condition. The distribution of these comorbidity-corrected weights were used to estimate the fraction of individuals with each condition falling into different GBD severity categories, including asymptomatic (implying disability weight of zero). Results: After correcting for comorbid conditions, all causes analyzed had some proportion of the population in the asymptomatic category. For less severe conditions, such as alopecia areata, we estimated that 44.1 % [95 % CI: 38.7 %-49.4 %] were asymptomatic while 28.3 % [26.8 %-29.6 %] of anxiety disorders had asymptomatic cases. For 152 conditions, full distributions of severity were estimated. For anxiety disorders for example, we estimated the mean population proportions in the mild, moderate, and severe states to be 40.9 %, 18.5 %, and 12.3 % respectively. Thirty-seven of the analyzed conditions were used in the GBD 2013 estimates and are reported here. Conclusion: There is large heterogeneity in the disabling severity of conditions among individuals. The GBD 2013 approach allows explicit accounting for this heterogeneity in GBD estimates. Existing survey data that have collected health status together with information on the presence of a series of comorbid conditions can be used to fill critical gaps in the information on condition severity while correcting for effects of comorbidity. Our ability to make these estimates may be limited by lack of geographic variation in the data and by the current methodology for disability weights, which implies that severity must be binned rather than expressed in as a full distribution. Future country-specific data collection efforts will be needed to advance this research. [ABSTRACT FROM AUTHOR]

Measurement of health-related quality of life (HRQL) is essential to quantify the subjective burden of traumatic brain injury (TBI) in survivors. We performed a systematic review of HRQL studies in TBI to evaluate study design, instruments used, methodological quality, and outcome. Fifty-eight studies were included, showing large variation in HRQL instruments and assessment time points used. The Short Form-36 (SF-36) was most frequently used. A high prevalence of health problems during and after the first year of TBI was a common finding of the studies included. In the long term, patients with a TBI still showed large deficits from full recovery compared to population norms. Positive results for internal consistency and interpretability of the SF-36 were reported in validity studies. The Quality of Life after Brain Injury instrument (QOLIBRI), European Brain Injury Questionnaire (EBIQ), Child Health Questionnaire (CHQ), and the World Health Organization Quality of Life short version (WHOQOL-BREF) showed positive results, but evidence was limited. Meta-analysis of SF-36 showed that TBI outcome is heterogeneous, encompassing a broad spectrum of HRQL, with most problems reported in the physical, emotional, and social functioning domain. The use of SF-36 in combination with a TBI-specific instrument, i.e., QOLIBRI, seems promising. Consensus on preferred methodologies of HRQL measurement in TBI would facilitate comparability across studies, resulting in improved insights in recovery patterns and better estimates of the burden of TBI. [ABSTRACT FROM AUTHOR]

Introduction The disability-adjusted life year (DALY) is widely used to assess the burden of different health problems and risk factors. The disability weight, a value anchored between 0 (perfect health) and 1 (equivalent to death), is necessary to estimate the disability component (years lived with disability, YLDs) of the DALY. After publication of the ground-breaking Global Burden of Disease (GBD) 1996, alternative sets of disability weights have been developed over the past 16 years, each using different approaches with regards to the panel, health state description, and valuation methods. The objective of this study was to review all studies that developed disability weights and to critically assess the methodological design choices (health state and time description, panel composition, and valuation method). Furthermore, disability weights of eight specific conditions were compared. Methods Disability weights studies (1990-2012) in international peer-reviewed journals and grey literature were identified with main inclusion criteria being that the study assessed DALY disability weights for several conditions or a specific group of illnesses. Studies were collated by design and methods and evaluation of results. Results Twenty-two studies met the inclusion criteria of our review. There is considerable variation in methods used to derive disability weights, although most studies used a disease-specific description of the health state, a panel that consisted of medical experts, and nonpreference-based valuation method to assess the values for the majority of the disability weights. Comparisons of disability weights across 15 specific disease and injury groups showed that the subdivision of a disease into separate health states (stages) differed markedly across studies. Additionally, weights for similar health states differed, particularly in the case of mild diseases, for which the disability weight differed by a factor of two or more. Conclusions In terms of comparability of the resulting YLDs, the global use of the same set of disability weights has advantages, though practical constraints and intercultural differences should be taken into account into such a set. [ABSTRACT FROM AUTHOR]

Objective: To systematically review the methodology of general burden of disease studies. Three key questions were addressed: 1) what was the quality of the data, 2) which methodological choices were made to calculate disability adjusted life years (DALYs), and 3) were uncertainty and risk factor analyses performed? Furthermore, DALY outcomes of the included studies were compared. Methods: Burden of disease studies (1990 to 2011) in international peer-reviewed journals and in grey literature were identified with main inclusion criteria being multiple-cause studies that quantified the burden of disease as the sum of the burden of all distinct diseases expressed in DALYs. Electronic database searches included Medline (PubMed), EMBASE, and Web of Science. Studies were collated by study population, design, methods used to measure mortality and morbidity, risk factor analyses, and evaluation of results. Results: Thirty-one studies met the inclusion criteria of our review. Overall, studies followed the Global Burden of Disease (GBD) approach. However, considerable variation existed in disability weights, discounting, age-weighting, and adjustments for uncertainty. Few studies reported whether mortality data were corrected for missing data or underreporting. Comparison with the GBD DALY outcomes by country revealed that for some studies DALY estimates were of similar magnitude; others reported DALY estimates that were two times higher or lower. Conclusions: Overcoming "error" variation due to the use of different methodologies and low-quality data is a critical priority for advancing burden of disease studies. This can enlarge the detection of true variation in DALY outcomes between populations or over time. [ABSTRACT FROM AUTHOR]

Background: Among trauma patients relatively high prevalence rates of posttraumatic stress disorder (PTSD) have been found. To identify opportunities for prevention and early treatment, predictors and course of PTSD need to be investigated. Long-term follow-up studies of injury patients may help gain more insight into the course of PTSD and subgroups at risk for PTSD. The aim of our long-term prospective cohort study was to assess the prevalence rate and predictors, including pre-hospital trauma care (assistance of physician staffed Emergency Medical Services (EMS) at the scene of the accident), of probable PTSD in a sample of major trauma patients at one and two years after injury. The second aim was to assess the long-term course of probable PTSD following injury. Methods: A prospective cohort study was conducted of 332 major trauma patients with an Injury Severity Score (ISS) of 16 or higher. We used data from the hospital trauma registry and self-assessment surveys that included the Impact of Event Scale (IES) to measure probable PTSD symptoms. An IES-score of 35 or higher was used as indication for the presence of probable PTSD. Results: One year after injury measurements of 226 major trauma patients were obtained (response rate 68%). Of these patients 23% had an IES-score of 35 or higher, indicating probable PTSD. At two years after trauma the prevalence rate of probable PTSD was 20%. Female gender and co-morbid disease were strong predictors of probable PTSD one year following injury, whereas minor to moderate head injury and injury of the extremities (AIS less than 3) were strong predictors of this disorder at two year follow-up. Of the patients with probable PTSD at one year follow-up 79% had persistent PTSD symptoms a year later. Conclusions: Up to two years after injury probable PTSD is highly prevalent in a population of patients with major trauma. The majority of patients suffered from prolonged effects of PTSD, underlining the importance of prevention, early detection, and treatment of injury-related PTSD. [ABSTRACT FROM AUTHOR]

Background: Three approaches exist to deal with the impact of comorbidity in burden of disease studies - the maximum limit approach, the additive approach, and the multiplicative approach. The aim of this study was to compare the three comorbidity approaches in patients with temporary injury consequences as well as comorbid chronic conditions with nontrivial health impacts. Methods: Disability weights were assessed using data from the EQ-5D instrument developed by the EuroQol Group and derived from a postal survey among 2,295 injury patients at 2.5 and 9 months after being treated at an emergency department. We compared the observed and predicted EQ-5D disability weights in comorbid cases using data from injury patients with and without comorbidity who were restored from their injuries at 9 months follow-up. The predicted disability weights were calculated using the maximum limit approach, additive approach, and multiplicative approach. The intraclass correlation coefficient (ICC) was used to test whether the values of the observed disability weights and the three model-predicted disability weights were correlated. Results: The EQ-5D disability weight of injury patients increased significantly with the number of comorbid diseases. The ICCs of the additive, multiplicative, and maximum limit models were 0.817, 0.778, and 0.674, respectively. Although the 95% confidence intervals of the ICCs of the three models overlap, the maximum limit model seems to fit less well than the additive and multiplicative models. For mild to moderate chronic disease (disability weight below 0.21), the association between predicted and observed disability weights was low. Conclusions: Comorbidity has a high impact on disability measured with EQ-5D. Ignoring the effect of comorbidity restricts the use of the burden of disease concept in multimorbid populations. Gains from health care or interventions may be easily overestimated if a substantial number of patients suffer from additional conditions. The results of this study found that in accounting for comorbidity effects, all three models showed a strong association between the predicted and observed morbid disability weight, though the maximum limit model seems to fit less well than the additive and multiplicative models. The three models do not fit well in the case of mild to moderate pre-existing disease. [ABSTRACT FROM AUTHOR]

Background: It is important to obtain greater insight into health-related quality of life (HRQL) of injury patients in order to document people's pathways to recovery and to quantify the impact of injury on population health over time. We performed a systematic review of studies measuring HRQL in general injury populations with a generic health state measure to summarize existing knowledge. Methods: Injury studies (1995-2009) were identified with main inclusion criteria being the use of a generic health status measure and not being restricted to one specific type of injury. Articles were collated by study design, HRQL instrument used, timing of assessment(s), predictive variables and ability to detect change over time. Results: Forty one studies met inclusion criteria, using 24 different generic HRQL and functional status measures (most used were SF-36, FIM, GOS, EQ-5D). The majority of the studies used a longitudinal design, but with different lengths and timings of follow-up (mostly 6, 12, and 24 months). Different generic health measures were able to discriminate between the health status of subgroups and picked up changes in health status between discharge and 12 month follow-up. Most studies reported high prevalences of health problems within the first year after injury. The twelve studies that reported HRQL utility scores showed considerable but incomplete recovery in the first year after discharge. Conclusion: This systematic review demonstrates large variation in use of HRQL instruments, study populations, and assessment time points used in studies measuring HRQL of general injury populations. This variability impedes comparison of HRQL summary scores between studies and prevented formal meta-analyses aiming to quantify and improve precision of the impact of injury on population health over time. [ABSTRACT FROM AUTHOR]

Background: Injury is the major cause of death and suffering among children and adolescents, but awareness of the problem and political commitment for preventive actions remain unacceptably low. We have assessed variation in the burden of injuries in childhood and adolescence in eight European countries. Methods: Hospital, emergency department, and mortality databases of injury patients aged 0-24 years were analyzed for Austria, Denmark, Ireland, Latvia, Netherlands, Norway, Slovenia and the United Kingdom (England, Wales). Years lost due to premature mortality (YLL), years lived with disability (YLD), and disability adjusted life years (DALYs) were calculated. Results: Differences in the burden of injury in childhood and adolescence are large, with a fourfold gap between the safest countries (Netherlands and UK) in western-Europe and the relatively unsafe countries (Latvia and Slovenia) in the east. Variation between countries is attributable to high variation in premature mortality (YLL varied from 14-58 per 1000 persons) and disability (YLD varied from 3-10 per 1000 persons). Highest burden is observed among males ages 15-24. If childhood and adolescence injuries are reduced to the level of current best injury prevention practices, 6 DALYs per 1000 child years can be avoided. Conclusions: Injuries in childhood and adolescence cause a high disability and mortality burden in Europe. In all developmental stages large inequalities between west and east are observed. Potential benefits up to almost 1 million healthy child years gained across Europe are possible, if proven ways for prevention are more widely implemented. Our children deserve action now. [ABSTRACT FROM AUTHOR]

Background: In calculations of burden of disease using disability-adjusted life years, disability weights are needed to quantify health losses relating to non-fatal outcomes, expressed as years lived with disability. In 2012 a new set of global disability weights was published for the Global Burden of Disease 2010 (GBD 2010) study. That study suggested that comparative assessments of different health outcomes are broadly similar across settings, but the significance of this conclusion has been debated. The aim of the present study was to estimate disability weights for Europe for a set of 255 health states, including 43 new health states, by replicating the GBD 2010 Disability Weights Measurement study among representative population samples from four European countries. Methods: For the assessment of disability weights for Europe we applied the GBD 2010 disability weights measurement approach in web-based sample surveys in Hungary, Italy, Netherlands, and Sweden. The survey included paired comparisons (PC) and population health equivalence questions (PHE) formulated as discrete choices. Probit regression analysis was used to estimate cardinal values from PC responses. To locate results onto the 0-to-1 disability weight scale, we assessed the feasibility of using the GBD 2010 scaling approach based on PHE questions, as well as an alternative approach using non-parametric regression. Results: In total, 30,660 respondents participated in the survey. Comparison of the probit regression results from the PC responses for each country indicated high linear correlations between countries. The PHE data had high levels of measurement error in these general population samples, which compromises the ability to infer ratio-scaled values from discrete choice responses. Using the non-parametric regression approach as an alternative rescaling procedure, the set of disability weights were bounded by distance vision mild impairment and anemia with the lowest weight (0.004) and severe multiple sclerosis with the highest weight (0.677). Conclusions: PC assessments of health outcomes in this study resulted in estimates that were highly correlated across four European countries. Assessment of the feasibility of rescaling based on a discrete choice formulation of the PHE question indicated that this approach may not be suitable for use in a web-based survey of the general population. Electronic supplementary material The online version of this article (doi:10.1186/s12963-015-0042-4) contains supplementary material, which is available to authorized users.

Background: Patient satisfaction is an important indicator of emergency care quality and has been associated with information dispensation at the emergency department (ED). Optimal information dispensation could improve patient experience and expectations. Knowing what kind of information patients want to receive and the preferred way of information dispensation are essential to optimize information delivery at the ED. The purpose of this cross-sectional observational study was to evaluate patient satisfaction concerning information dispensation (including general, medical, and practical information), the need for additional information, and preferences with regard to the way of information dispensation at the ED of a teaching hospital in the Netherlands., Results: Four hundred twenty-three patients (patients ≥ 18 years with Glasgow Coma Scale 15) were enrolled (response rate 79%). The median patient satisfaction score concerning the overall information dispensation at the ED was 7.5 on a rating scale 0-10. Shorter length of ED stay was associated with higher patient satisfaction in multivariate analysis (P < 0.001). The majority of respondents were satisfied regarding medical (n = 328; 78%) and general information (n = 233; 55%). Patients were less satisfied regarding practical information (n = 180; 43%). Respondents who indicated that they received general, medical and practical information were significantly more often satisfied compared to patients who did not receive this information (P < 0.001). Two thirds (n = 260; 62%) requested more general information. Half of the respondents (n = 202; 48%) requested more practical information and a third (n = 152; 36%) requested more medical information. The preferred way for receiving information was orally (n = 189; 44.7%) or by leaflets (n = 108; 25.5%)., Conclusion: The majority of respondents were satisfied concerning information dispensation at the ED, especially regarding medical information. Respondents requested more general and practical information and preferred to receive the information orally or by leaflets., (© 2022. The Author(s).)

Background: The objective of this study was to determine the attitude of patients, healthcare professionals, and noninjured lay persons towards adding a video with discharge instructions to patient care for patients with mild traumatic brain injury (MTBI). A survey was conducted at the emergency department (ED). Participants consisted of MTBI patients (n = 50), healthcare professionals (n = 50), and noninjured lay persons (n = 50). The participants viewed a video with discharge instructions on MTBI and filled out a questionnaire that measured their attitude towards the use of a video as part of discharge instructions., Findings: Nearly all healthcare professionals (94%) and 70% of the noninjured lay persons considered the video to be a valuable addition to oral discharge instructions. For 84% of patients, verbal information from the doctor is of importance. And, 50% of patients would like to receive additional video discharge instructions., Conclusions: The majority of noninjured lay persons and healthcare professionals and half of the MTBI patients consider a video with discharge instructions to be a valuable addition to patient care. Video discharge instructions are a relative low-cost measure that could enhance patient care at the ED, provided that this does not compromise the personal contact between patient and healthcare professional.

Background: Among injury victims relatively high prevalence rates of posttraumatic stress disorder (PTSD) have been found. PTSD is associated with functional impairments and decreased health-related quality of life (HRQoL). Previous studies that addressed the latter were restricted to injuries at the higher end of the severity spectrum. This study examined the association between PTSD symptoms and health-related quality of life (HRQoL) in a comprehensive population of injury patients of all severity levels and external causes., Methods: We conducted a self-assessment survey which included items regarding demographics of the patient, accident type, sustained injuries, EuroQol health classification system (EQ-5D) and Health Utilities Index (HUI) to measure functional outcome and HRQoL, and the Impact of Event Scale (IES) to measure PTSD symptoms. An IES-score of 35 or higher was used as indication for the presence of PTSD. The survey was completed by 1,781 injury patients two years after they were treated at the Emergency Department (ED), followed by either hospital admission or direct discharge to the home environment., Results: Symptoms indicative of PTSD were associated with more problems on all EQ-5D and HUI3 domains of functional outcome and a considerable utility loss in both hospitalized (0.23-0.24) and non-hospitalized (0.32-0.33) patients. Differences in reported problems between patients with IES scores higher or lower than 35 were largest for EQ-5D health domains pain/discomfort (82% versus 28%) and anxiety/depression (53% versus 11%) and HUI domains emotion (92% versus 33%) and pain (84% versus 38%). After adjusting for potential confounders, PTSD remained strongly associated with adverse HRQoL., Conclusions: Among patients treated at an ED posttraumatic stress symptoms indicative of PTSD were associated with a considerable decrease in HRQoL in both hospitalized and non-hospitalized patients. PTSD symptoms may therefore raise a major barrier for full recovery of injury patients of even minor levels of severity.

Background: Burden of disease estimates, which combine mortality and morbidity into a single measure, are used increasingly for priority setting in disease control, prevention and surveillance. However, because there is no clear exclusion criterion for highly prevalent minimal disease in burden of disease studies its application may be restricted. The aim of this study was to apply a newly developed relevance criterion based on preferences of a population panel, and to compare burden of disease estimates of five foodborne pathogens calculated with and without application of this criterion., Methods: Preferences for twenty health states associated with foodborne disease were obtained from a population panel (n = 107) with the Visual Analogue Scale and the Time Trade-off (TTO) technique. The TTO preferences were used to derive the relevance criterion: if at least 50% of a panel of judges is willing to trade-off time in order to be restored to full health the health state is regarded as relevant, i.e. TTO median is greater than 0. Subsequently, the burden of disease of each of the five foodborne pathogens was calculated both with and without the relevance criterion., Results: The panel ranked the health states consistently. Of the twenty health states, three did not meet the preference-based relevance criterion. Application of the relevance criterion reduced the burden of disease estimate of all five foodborne pathogens. The reduction was especially significant for norovirus and rotavirus, decreasing with 94% and 78% respectively., Conclusion: Individual preferences elicited with the TTO from a population panel can be used to empirically derive a relevance criterion for burden of disease estimates. Application of this preference-based relevance criterion results in considerable changes in ranking of foodborne pathogens.