The Short- and Long-Term Outcome Priorities of a Western Australian Adult Burn Population

To optimize patient recovery, understanding which outcomes are most important to burn patients is key. However, research to determine what outcomes are patient priorities is limited. Therefore, we assessed what outcomes are most important to Western Australian burn patients, separately in the short-term (&lt;6 months) and long-term (6-24 months) after injury. Adult patients who had a burn injury 3-36 months ago completed a survey, rating the importance of 36 short- and long-term outcomes. The survey items were ranked according to the number of patients reporting the outcome as "very important."Results were compared between subgroups based on age, gender, burn size, and number of surgeries. Ninety-three patients were included. In the short-term, "not having a wound infection"(87.1%), "good wound healing"(83.9%), and "walking or moving around"(74.7%) were the most important outcomes. "Lifting or moving something"(67.6%), "walking or moving around"(66.2%), and "being independent"(66.2%) were reported as most important in the long-term. Scar-related outcomes were more important to females and to patients with multiple surgeries; mental health outcomes were priorities for females and patients with major burns; walking and moving around to males and older patients; and social and financial outcomes were rated highly by patients with major burns and multiple surgeries. In conclusion, the most important outcomes were consistent across time periods, indicating the importance of core outcomes in longitudinal follow-up. The wide range of priority outcomes and differences between subgroups underlines the need for multidisciplinary care and a patient-centered approach to support patients.</p

Improved and standardized method for assessing years lived with disability after burns and its application to estimate the non-fatal burden of disease of burn injuries in Australia, New Zealand and the Netherlands

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  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

Conventional and retrospective change in health-related quality of life of trauma patients: An explorative observational follow-up study

Background: Within trauma care measurement of changes in health-related quality of life (HRQL) is used in understanding patterns of recovery over time. However, conventionally-measured change in HRQL may not always reflect the change in HRQL as perceived by the patient. Recall bias and response shift may contribute to disagreement between conventional and retrospective change in HRQL. This study aimed to measure conventional and retrospective change of HRQL and assess to which extent recall bias and resp

Long-term health outcomes of Q-fever fatigue syndrome patients

This study determined long-term health outcomes (≥10 years) of Q-fever fatigue syndrome (QFS). Long-term complaints, health-related quality of life (HRQL), health status, energy level, fatigue, post-exertional malaise, anxiety, and depression were assessed. Outcomes and determinants were studied for the total sample and compared among age subgroups: young (&lt;40years), middle-aged (≥40-&lt;65years), and older (≥65years) patients. 368 QFS patients were included. Participants reported a median number of 12.0 long-term complaints. Their HRQL (median EQ-5D-5L index: 0.63) and health status (median EQ-VAS: 50.0) were low, their level of fatigue was high, and many experienced post-exertional malaise complaints (98.9%). Young and middle-aged patients reported worse health outcomes compared with older patients, with both groups reporting a significantly worse health status, higher fatigue levels and anxiety, and more post-exertional malaise complaints and middle-aged patients having a lower HRQL and a higher depression risk. Multivariate regression analyses confirmed that older age is associated with better outcomes, except for the number of health complaints. QFS has thus a considerable impact on patients' health more than 10 years after infection. Young and middle-aged patients experience more long-term health consequences compared with older patients. Tailored health care is recommended to provide optimalcare for each QFS patient.</p

Health care utilization and health-related quality of life of injury patients:comparison of educational groups

BACKGROUND: Differences in health care utilization by educational level can contribute to inequalities in health. Understanding health care utilization and health-related quality of life (HRQoL) of educational groups may provide important insights into the presence of these inequalities. Therefore, we assessed characteristics, health care utilization and HRQoL of injury patients by educational level. METHOD: Data for this registry based cohort study were extracted from the Dutch Injury Surveillance System. At 6-month follow-up, a stratified sample of patients (≥25 years) with an unintentional injury reported their health care utilization since discharge and completed the EQ-5-Dimension, 5-Level (EQ-5D-5L) and visual analogue scale (EQ VAS). Logistic regression analyses, adjusting for patient and injury characteristics, were performed to investigate the association between educational level and health care utilization. Descriptive statistics were used to analyse HRQoL scores by educational level, for hospitalized and non-hospitalized patients. RESULTS: This study included 2606 patients; 47.9% had a low, 24.4% a middle level, and 27.7% a high level of education. Patients with low education were more often female, were older, had more comorbidities, and lived more often alone compared to patients with high education (p < 0.001). Patients with high education were more likely to visit a general practitioner (OR: 1.38; CI: 1.11–1.72) but less likely to be hospitalized (OR: 0.79; CI: 0.63–1.00) and to have nursing care at home (OR: 0.66; CI: 0.49–0.90) compared to their low educated counterparts. For both hospitalized an non-hospitalized persons, those with low educational level reported lower HRQoL and more problems on all dimensions than those with a higher educational level. CONCLUSION: Post-discharge, level of education was associated with visiting the general practitioner and nursing care at home, but not significantly with use of other health care services in the 6 months post-injury. Additionally, patients with a low educational level had a poorer HRQoL. However, other factors including age and sex may also explain a part of these differences between educational groups. It is important that patients are aware of potential consequences of their trauma and when and why they should consult a specific health care service after ED or hospital discharge. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-021-06913-3

Evaluation of measurement properties of health-related quality of life instruments for burns: A systematic review

BACKGROUND: Health-related quality of life (HRQL) is a key outcome in the evaluation of burn treatment. Health-related quality of life instruments with robust measurement properties are required to provide high-quality evidence to improve patient care. The aim of this review was to critically appraise the measurement properties of HRQL instruments used in burns. METHODS: A systematic search was conducted in Embase, MEDLINE, CINAHL, Cochrane, Web of Science, and Google scholar to reveal articles on the development and/or validation of HRQL instruments in burns. Measurement properties were assessed using the Consensus-based Standards for the selection of health Measurement Instruments methodology. A modified Grading of Recommendations, Assessment, Development, and Evaluation analysis was used to assess risk of bias (prospero ID, CRD42016048065). RESULTS: Forty-three articles covering 15 HRQL instruments (12 disease-specific and 3 generic instruments) were included. Methodological quality and evidence on measurement properties varied widely. None of the instruments provided enough evidence on their measurement properties to be highly recommended for routine use; however, two instruments had somewhat more favorable measurement properties. The Burn-Specific Health Scale-Brief (BSHS-B) is easy to use, widely accessible, and demonstrated sufficient evidence for most measurement properties. The Brisbane Burn Scar Impact Profiles were the only instruments with high-quality evidence for content validity. CONCLUSION: The Burn Specific Health Scale-Brief (burn-specific HRQL) and the Brisbane Burn Scar Impact Profile (burn scar HRQL) instruments have the best measurement properties. There is only weak evidence on the measurement properties of generic HRQL instruments in burn patients. Results of this study form important input to reach consensus on a universally used instrument to assess HRQL in burn patients. LEVEL OF EVIDENCE: Systematic review, level III

The prolonged impact of COVID-19 on symptoms, health-related quality of life, fatigue and mental well-being:a cross-sectional study

Background: A subset of patients experience persisting symptoms after an acute COVID-19 infection, referred to as “post COVID-19 condition”. This cross-sectional study aimed to compare symptoms, health-related quality of life (HRQoL), fatigue, mental well-being, and determinants of diminished HRQoL, between patients with post COVID-19 condition categorized by time since acute infection.Methods: We performed an online survey and analyzed responses of 10,194 adult respondents with a confirmed or suspected COVID-19 infection, who experienced persisting symptoms ≥3 months after the initial infection. The most debilitating symptoms and health outcomes were studied separately for respondents 3–6, 7–9, 10–12, 13–18, 19–24, and &gt;24 months after acute infection.Results: At each time period, fatigue, sensory-processing problems, and concentration problems were the most debilitating symptoms reported by respondents, although the proportion of respondents who reported these symptoms differed significantly between time periods. Respondents 3–6 months post-acute infection had the lowest HRQoL (median EQ-5D utility score: 0.59), the highest fatigue level (median score: 110.0) and the highest proportion with a likely depressive disorder (32.4%), whereas respondents 13–18 months post-infection had the highest HRQoL (0.65), the lowest fatigue level (106.0), and the second lowest proportion with a likely depressive disorder (25.0%) (p = 0.000–0.007). Compared to those 13–18 and 19–24 months post-infection, respondents &gt;24 months post-infection had a slightly lower HRQoL (0.60), lower fatigue level (108.0), and lower proportion with a likely depressive disorder (29.2%), although only the differences in HRQoL were statistically significant (p = 0.001–0.010). Younger age, female gender, lower level of education, not having paid work before COVID-19, comorbidity, and not being vaccinated, seemed to be associated with lower HRQoL.Conclusion: Regardless of time since infection, respondents considered fatigue, sensory processing problems and concentration problems the most debilitating symptoms. They experienced a low HRQoL and severe fatigue, even more than two years after acute COVID-19 infection. Respondents 3–6 months post-infection had the worst health outcomes, whereas respondents 13–18 months post-infection had the best outcomes, indicating that, at least for a subgroup of patients, health status may improve over time

Comparison of three different methods to estimate the burden of disease of burn injuries in Western Australia in 2011-2018

Background: Priority setting and resource allocation in health care, surveillance and interventions is based increasingly on burden of disease. Several methods exist to calculate the non-fatal burden of disease of burns expressed in years lived with disability (YLDs). The aim of this study was to assess the burden of disease due to burns in Western Australia 2011–2018 and compare YLD outcomes between three existing methods. Methods: Data from the Burns Service of Western Australia was used. Three existing methods to assess YLDs were compared: the Global Burden of Disease (GBD) method, a method dedicated to assess injury YLDs (Injury-VIBES), and a method dedica

Improved and standardized method for assessing years lived with disability after burns and its application to estimate the non-fatal burden of disease of burn injuries in Australia, New Zealand and the Netherlands

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 w