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Assessing the burden of injuries: competing measures.

OBJECTIVES: This paper compares the different types of injury burden measures in common use and examines criteria that may be useful to consider when selecting between alternative measures. METHODS: A review was conducted of relevant literature relating to burden of injury measures, important characteristics of data information systems and ethical frameworks for normative analysis in the health sector. RESULTS: Four broad types of burden of injury measures can be distinguished: mortality-related indices; morbidity-related indices; composite measures combining mortality and morbidity; and monetary costs. Each type of measure uses its own construct of injury burden. For example, mortality data defines the injury burden as comprising only fatalities whereas comprehensive costs attempt to capture the total wellbeing lost through injury. Different measures of the burden of injury present differential rankings of the causes and intent of injury, thus the question arises as to what criteria should be used in selecting the best measure. Each measure of the burden of injury has merits and limitations. In selecting between injury measures, consideration should be given to the nature of the policy question, the construct of injury burden that each measure assesses, the availability of data for the measure and its quality and the ethical values inherent in each measure. CONCLUSIONS: Measures of the burden of injury play a useful role in positioning injury as a major public health problem and in policy work relating to injury prevention and control. No single measure of the burden of injury is ideal and several measures can be used together if necessary to provide different perspectives on an injury problem.

Cost of Illness↗

The reliability and validity of the Chinese version of the caregiver burden inventory.

BACKGROUND: The assessment of burden has become a challenging task for most researchers because cultural, ethical, religious, and other personal values may influence perceptions of the meaning and consequences of burden. The lack of examination of the psychometric properties of the burden measures across studies limits the scientific rigor for generating additional research into "burden." OBJECTIVE: To examine the psychometric properties of the Chinese version of the Caregiver Burden Inventory for its utility in clinical and research practice. METHOD: The first investigation evaluated the consistency between the Chinese and English versions of the Caregiver Burden Inventory. The second investigation established the internal consistent reliability, test-retest reliability, content validity, concurrent validity, and construct validity. RESULTS: A paired -test and intra-class correlation indicated that the Chinese version of the Caregiver Burden Inventory was a very good reflection of the English version and demonstrated item equivalence. It also showed adequate internal consistency reliability, appropriate content validity, and concurrent validity. Factor analysis revealed moderate intercorrelations between subscales and high factor loadings also helped to clarify the psychometric meaning. DISCUSSION: The reliability and validity information presented in this paper support using the Chinese version of the Caregiver Burden Inventory as a research instrument in measuring the caregiver burden in the Chinese population. Further study is needed to discriminate the developmental, emotional, and social burden constructs.

Activities of Daily Living↗

The validity and reliability of a Chinese version of the family burden interview schedule.

BACKGROUND: The caregiver burden within the family is one of the most commonly used outcome variables in research studies of patient care provision. However, few measures of family caregiver burden have been validated for use with Asian populations. OBJECTIVE: To examine the reliability and validity of the Chinese version of the Family Burden Interview Schedule. METHOD: The first phase of the investigation involved translation and back translation of the measure for burden and a review by an expert panel. In this phase, equivalence between the Chinese and English versions, content validity, and test-retest reliability of the Family Burden Interview Schedule were assessed using a sample including 30 family caregivers of mental patients. The second phase established the internal consistency and construct validity of the scale using a sample comprising 185 family caregivers of patients with schizophrenia. Sensitivity of the scale for families of schizophrenic patients was examined through comparison with 40 caregivers of patients who had major affective disorder. RESULTS: The Chinese version of the Family Burden Interview Schedule adequately addressed the original concepts and dimensions, achieving 96% on the Content Validity Index. These results demonstrated high levels of equivalence with the original English version (intra-class correlation [ICC] of .87 for the overall scale and.80-.89 for the six domains). It also demonstrated a high internal consistency (Cronbach alpha of .87 for the scale and .78-.88 for the domains) and adequate test - retest response stability (r = .83 for the scale and r = .88-.92 for the domains). The mean scores for the overall scale and domains of the Family Burden Interview Schedule differed significantly between the family providers of care for the two illness groups and between the groups with high and low time involvement in caregiving. The principal components analysis showed the presence of five factors that together explained 65.85% of the variance. It also demonstrated high factor loadings as well as item-to-scale and between-subscales intercorrelations, indicating good construct validity of the burden measure. DISCUSSION: The findings for the psychometric properties of the Chinese version of the Family Burden Interview Schedule established its potential as a research instrument for measuring caregiver burden among Chinese patients with schizophrenia.

Asian People↗

A multinational review of recent trends and reports in dementia caregiver burden.

This systematic review of the literature focuses on the influence of ethnic, cultural, and geographic factors on the caregivers of patients with dementia. In particular, we explore the impact of cultural expectations on five important questions: 1) Do the characteristics of dementia affect caregiver burden? 2) Do characteristics of the caregiver independently predict burden? 3) Does the caregiver affect patient outcomes? 4) Does support or intervention for caregiver result in reduced caregiver burden or improved patient outcomes? 5) Finally, do patient interventions result in reduced caregiver burden or improved patient outcomes? Our findings suggest that noncognitive, behavioral disturbances of patients with dementia result in increased caregiver burden and that female caregivers bear a particularly heavy burden across cultures, particularly in Asian societies. Caregiver burden influences time to medical presentation of patients with dementia, patient condition at presentation, and patient institutionalization. Moreover, interventions designed to reduce caregiver burden have been largely, although not universally, unsuccessful. Pharmacological treatments for symptoms of dementia were found to be beneficial in reducing caregiver burden. The consistency of findings across studies, geographic regions, cultural differences, and heathcare delivery systems is striking. Yet, there are critical differences in cultural expectations and social resources. Future interventions to reduce caregiver burden must consider these differences, identify patients and caregivers at greatest risk, and develop targeted programs that combine aspects of a number of interventional strategies.

Aged↗

Burden and health outcomes of family caregivers of hospitalized bone marrow transplant patients.

Twenty-four family caregivers of bone marrow transplant (BMT) patients were interviewed to describe the burden of care and health outcomes (anxiety, depression, symptom distress and fatigue). A descriptive correlational research design with repeated measures was used. Data were collected in a conference room in the oncology unit of a midwestern university hospital using a battery of questionnaires. Questionnaires were administered pre-BMT (prior to the patient's hospitalization) and 5 and 20 days post-BMT. Objective burden remained at a similar level throughout the study (mean range 31.4 to 32.9), whereas subjective burden was highest pre-BMT (mean range 25.3-21.7). Significant correlations were found between objective burden and all health outcomes (P < 0.01 to P < 0.001) on day 5. Symptom distress was significantly correlated to subjective burden pre-BMT and to both types of burden on days 5 and 20. Results of this study suggest that family caregivers of BMT patients may experience more objective burden than subjective burden, and that burden of care may contribute to negative health outcomes, especially on day 5 post-BMT. Interventions designed to reduce sources of caregiver burden and negative health outcomes should be planned according to critical time periods of the BMT patient's hospitalization.

Adult↗

The relationship of quality of life, depression, and caregiver burden in outpatients with congestive heart failure.

Primary caregivers of patients with congestive heart failure withstand enormous burden, often sacrificing their own quality of life. The relationship between caregiver burden and depression and patient quality of life and depression in this setting is unknown. Fifty outpatients were prospectively administered the Minnesota Living with Heart Failure Questionnaire and Beck Depression Inventory II (BDI-II). Caregivers were administered the Zarit Caregiver Burden Interview and BDI-II. The mean quality of life score was 35, and 26% had a BDI-II score >10. The mean Zarit Caregiver Burden Interview score was 16. Minnesota Living with Heart Failure Questionnaire, BDI-II, and Zarit Caregiver Burden Interview scores were all associated with lower ejection fraction, need for hospitalization, increased number of medications, and comorbidities. Patient Minnesota Living with Heart Failure Questionnaire score correlated with patient BDI-II, caregiver BDI-II, and Zarit Caregiver Burden Interview scores. Caregiver burden score correlated with both caregiver BDI-II and patient BDI-II. Death or hospitalization at 6 months was associated with caregiver burden and depressive symptoms and with patient quality of life and depressive symptoms. Caregivers of patients with congestive heart failure experience high caregiver burden and prevalence of depressive symptoms, which are related to the patient disease burden.

Age Distribution↗

The burden of asthma in the United States: level and distribution are dependent on interpretation of the national asthma education and prevention program guidelines.

Asthma imposes a growing burden on society in terms of morbidity, quality of life, and healthcare costs. Although federally sponsored national surveys provide estimates of asthma prevalence, these surveys are not designed to characterize the burden of asthma by self-reported disease activity. We sought to characterize asthma burden in the United States. This study was based on a cross-sectional random-digit-dial household telephone survey designed to identify adult patients and parents of children with current asthma. Global asthma burden was comprised of three components: short-term symptom burden (4-week recall), long-term symptom burden (past year), and functional impact (activity limitation). Using this construct, only 10.7% of individuals were classified as having a global asthma burden consistent with mild intermittent disease, and 77.3% had moderate to severe persistent disease. These results suggest that a majority of the United States population with asthma experiences persistent rather than intermittent asthma burden. In addition, the discordance in type and distribution of asthma symptoms reported by individual subjects suggests that the exact estimate of the burden of asthma is related to how the National Asthma Education and Prevention Program classification is operationalized. Inquiry into recent day or nighttime symptoms alone underestimates the burden of asthma and may lead to inadequate treatment of asthma based on national guideline recommendations.

Adolescent↗

Caregiving burden is associated with short rather than long duration of care for older persons.

This is a preliminary cross-sectional study of 51 caregivers of older persons attending the Geriatric Clinic at an urban hospital in Kuala Lumpur, Malaysia. A questionnaire helped determine how the duration of caregiving affects the outcome of caregiver burden. The short version of Zarit's Burden Interview (BI) allowed the burden level to be grouped as low or high burden. The duration of caregiving was also grouped into short (two or less years) or long (more than two years) durations. One third of the caregivers, 31% (16 out of 51) reported high burden and within this group 81%, (13 out of 16) are short duration caregivers. Majority of the longer duration caregivers, 88% (21 out of 24) reported low level of burden. This was a significant finding (p-value 0.008). The study also showed that a higher proportion of caregivers are employed, working in the private sector, and earn less than RM2,000 per month. However, these findings were not significantly associated with high burden. It is concluded that although this study showed low level of caregiver burden, shorter duration of caregiving is associated with higher level of burden and longer duration of caregiving is associated with lower level of burden.

Aged↗

Psychological distress, fatigue, burden of care, and quality of life in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation.

PURPOSE/OBJECTIVES: To determine the effects of sociodemographic variables, psychological distress, fatigue, and quality of life (QOL) on burden of care in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation (BMT). DESIGN: Descriptive, correlational, predictive. SETTING: Urban National Cancer Institute-designated comprehensive cancer center in the eastern United States. SAMPLE: Convenience sample of 102 primary caregivers. METHODS: Participants completed the sociodemographic data form, Piper Fatigue Scale, Beck Depression Inventory, State-Trait Anxiety Inventory, QOL Index, and Measurement of Objective and Subjective Burden Scales prior to BMT during an oncology clinic visit. MAIN RESEARCH VARIABLES: Depression, anxiety, fatigue, QOL, and burden of care. FINDINGS: Mean fatigue scores were low. Primary caregivers experienced moderate state anxiety and low trait anxiety. Some experienced severe depression. The objective burden of care mean score was slightly higher than the subjective mean score. Mean QOL scores were low. All variables were significantly intercorrelated, except subjective burden and temporal and sensory fatigue. Significant correlations were found between age and subjective burden, and income with fatigue temporal subscale, and state and trait anxiety. Family subscale of QOL was a significant predictor of objective burden. Age and trait anxiety were significant predictors of subjective burden. CONCLUSIONS: Primary caregivers of patients with breast cancer scheduled for BMT experience fatigue, anxiety, burden of care, and low QOL. These caregivers may have tried to meet their needs and the patients' needs simultaneously. IMPLICATIONS FOR NURSING: Healthcare providers need to proactively assess primary caregivers of patients for fatigue, psychological distress, burden of care, and decreased QOL and provide nursing interventions tailored to individual needs.

Adult↗

An instrument to measure skeletal burden and predict functional outcome in fibrous dysplasia of bone.

UNLABELLED: An instrument to measure skeletal burden in fibrous dysplasia was developed. Biological and clinical relevance was shown by correlating skeletal burden scores with bone markers, quality of life, and ambulatory status. Childhood scores predict adult ambulatory status, and scores were unaffected when bone markers decreased with bisphosphonate treatment or aging. INTRODUCTION: Fibrous dysplasia (FD) is a skeletal disease with a broad clinical expression. There is no objective method to assess the extent of skeletal involvement or predict outcome. We developed an instrument to measure skeletal burden that correlates with physical function, health-related quality of life (HRQL), and ambulatory status. MATERIALS AND METHODS: Seventy-nine patients with FD underwent bone scintigraphy. The skeletal burden score was derived from a weighted score based on the regional measurement using bone scintigraphy to estimate the amount of FD in anatomical segments. Six readers scored 20 scans twice to determine the inter- and intrareader agreement. To assess biological significance, scores were correlated with bone markers. To assess functional outcome, scores on the SF-36 (adults) or CHQ-PF50 (children) were correlated with skeletal burden scores. In a group of patients who had bone scans as children and adults (n = 6), the ability to predict ambulatory status was tested. Skeletal burden scores were assessed in patients before and after treatment with pamidronate (n = 5). RESULTS: The inter- and intrareader agreement of burden scores were r = 0.96, and 0.98, respectively (p < 0.001 for both). The scores correlated with markers of bone metabolism and HRQL (Spearman rho, 0.54-0.67 p < 0.001 and -0.43, p = 0.001, respectively). The mean score of patients who ambulated unassisted was significantly lower than those requiring assistance (p < 0.001 unassisted versus crutch and/or wheelchair). In unassisted ambulators, younger patients had higher scores, suggesting high childhood scores may predict adulthood impairment. In six patients with childhood and adulthood scans, childhood scores >30 predicted assisted ambulation in adulthood. There was a negative correlation between bone markers and age (Spearman rho, -0.42 to -0.70; p < 0.001), but not age and skeletal burden score. Pamidronate treatment decreased serum alkaline phosphatase but had no effect on the skeletal burden score. CONCLUSIONS: This is a validated and reliable instrument for the measurement of skeletal burden of FD and is able to predict functional outcome.

Adolescent↗

Distribution of major health risks: findings from the Global Burden of Disease study.

BACKGROUND: Most analyses of risks to health focus on the total burden of their aggregate effects. The distribution of risk-factor-attributable disease burden, for example by age or exposure level, can inform the selection and targeting of specific interventions and programs, and increase cost-effectiveness. METHODS AND FINDINGS: For 26 selected risk factors, expert working groups conducted comprehensive reviews of data on risk-factor exposure and hazard for 14 epidemiological subregions of the world, by age and sex. Age-sex-subregion-population attributable fractions were estimated and applied to the mortality and burden of disease estimates from the World Health Organization Global Burden of Disease database. Where possible, exposure levels were assessed as continuous measures, or as multiple categories. The proportion of risk-factor-attributable burden in different population subgroups, defined by age, sex, and exposure level, was estimated. For major cardiovascular risk factors (blood pressure, cholesterol, tobacco use, fruit and vegetable intake, body mass index, and physical inactivity) 43%-61% of attributable disease burden occurred between the ages of 15 and 59 y, and 87% of alcohol-attributable burden occurred in this age group. Most of the disease burden for continuous risks occurred in those with only moderately raised levels, not among those with levels above commonly used cut-points, such as those with hypertension or obesity. Of all disease burden attributable to being underweight during childhood, 55% occurred among children 1-3 standard deviations below the reference population median, and the remainder occurred among severely malnourished children, who were three or more standard deviations below median. CONCLUSIONS: Many major global risks are widely spread in a population, rather than restricted to a minority. Population-based strategies that seek to shift the whole distribution of risk factors often have the potential to produce substantial reductions in disease burden.

Adolescent↗

Can rehabilitation in the home setting reduce the burden of care for the next-of-kin of stroke victims?

BACKGROUND: More evidence of the efficacy of caregiver interventions is needed. The aim of this study was to evaluate whether counselling in the home setting reduces the caregiver burden. METHODS: Thirty-six patients after stroke, median age 53 years, with a close family member, were selected for an evaluation of the burden of care and 35 participated. They were part of a randomized controlled trial, comparing rehabilitation in the home setting with outpatient rehabilitation. In the home setting, counselling about the stroke and its consequences was included. Assessments with the Caregiver Burden scale were made at 3 weeks, 3 months and one year after discharge. RESULTS: The burden of the 2 groups did not differ. After the intervention, there was a tendency to a lower burden for the home setting. The burden for the home setting was then unchanged from 3 weeks to 1 year, while outpatient rehabilitation showed a reduced burden over time. For the home setting, significant correlations to activity level were seen after the intervention. CONCLUSION: A positive effect of counselling was seen, as the home setting burden tends to be lower after the intervention, while outpatient rehabilitation seems to adjust with time. The results suggest that counselling reduces burden and the remaining burden is associated with the patient's ability.

Activities of Daily Living↗

[Reliability and validity of a new assessment of the burden on caregivers (ABC-16)].

The aim of this study was to evaluate the reliability and validity of a newly developed self-administered assessment of the burden on caregivers (ABC-16) in 82 caregivers (21 men: 61 women, mean age 61 +/- 13 years) including 51 family members caring for patients after stroke with physical impairments, and 31 family members caring for patents with chronic schizophrenia. The ABC-16 consists of 16 items and is designed to cover 4 domains (burden of troubles with care receivers, burden of loss of social life, financial burden, burden of impairment of caregiver's health). The internal consistency was high (alpha=0.854) and significant correlations among the four dimensions were found (P < 0.0001). Factorial analysis showed 5 latent factors and a multiple regression analysis showed the strong correlations between the ABC-16 and care giving during the night (P = 0.0045), which strongly suggested excellent validation. The mean and standard deviation of the total score of the ABC-16 was 14.66 +/- 7.87 (burden of troubles with care receivers; 4.10 +/- 2.36, burden of loss of social life; 4.21 +/- 2.54, financial burden; 2.93 +/- 2.65, burden of impairment of caregiver's health; 3.43 +/- 2.32). The results indicated that the ABC-16 was a tool assess care burden with high reliability and validity, and was carried out easily and quickly by all participants without complex explains.

Adult↗

The Australian Burden of Disease Study: measuring the loss of health from diseases, injuries and risk factors.

This is an overview of the first burden of disease and injury studies carried out in Australia. Methods developed for the World Bank and World Health Organization Global Burden of Disease Study were adapted and applied to Australian population health data. Depression was found to be the top-ranking cause of non-fatal disease burden in Australia, causing 8% of the total years lost due to disability in 1996. Mental disorders overall were responsible for nearly 30% of the non-fatal disease burden. The leading causes of total disease burden (disability-adjusted life years [DALYs]) were ischaemic heart disease and stroke, together causing nearly 18% of the total disease burden. Depression was the fourth leading cause of disease burden, accounting for 3.7% of the total burden. Of the 10 major risk factors to which the disease burden can be attributed, tobacco smoking causes an estimated 10% of the total disease burden in Australia, followed by physical inactivity (7%).

Australia↗

On the comparable quantification of health risks: lessons from the Global Burden of Disease Study.

Extensive discussion and comments on the Global Burden of Disease Study findings have suggested the need to examine more carefully the basis for comparing the magnitude of different health risks. Attributable burden can be defined as the difference between burden currently observed and burden that would have been observed under an alternative population distribution of exposure. Population distributions of exposure may be defined over many different levels and intensities of exposure (such as systolic or diastolic blood pressure on a continuous scale), and the comparison distribution of exposure need not be zero. Avoidable burden is defined as the reduction in the future burden of disease if the current levels of exposure to a risk factor were reduced to those specified by the counterfactual distribution of exposure. Choosing the alternative population distribution for a variable, the counterfactual distribution of exposure, is the critical step in developing a more general and standardized concept of comparable, attributable, or avoidable burden. We have identified four types of distributions of exposure that could be used as the counterfactual distributions: theoretical minimum risk, plausible minimum risk, feasible minimum risk, and cost-effective minimum risk. Using tobacco and alcohol as examples, we explore the implications of using these different types of counterfactual distributions to define attributable and avoidable burden. The ten risk factor assessments included in the Global Burden of Disease Study reflect a range of methods and counterfactual distributions. We recommend that future assessments should focus on avoidable and attributable burden based on the plausible minimum risk counterfactual distribution of exposure.

Causality↗

Psychosocial burden of sickle cell disease on caregivers in a Nigerian setting.

In Nigeria, with a high prevalence of sickle cell disease (SCD), families bear most of the burden of care for patients with this chronically disabling illness, because there are no national social welfare provisions. To assess the severity of indices of psychosocial burden among relatives of 24 SCD patients in crisis, in comparison with relatives of 57 SCD patients in stable condition. Cross-sectional study, using a burden instrument and Goldberg's General Health Questionnaire. Objective burden indices were significantly higher for SCD in crisis. The financial burden of SCD in crisis was significantly higher than the burden of disruption of family routines. 57.9% of all caregivers experienced little or no difficulty coping with SCD. Relatives with higher educational and occupational attainments (compared with those with lower attainments) experienced significantly lesser financial burden, disruption of family routines, and psychological distress. Compared with a similar study of cancer patients, relatives of patients in SCD crisis perceived similar financial, family routine burdens and psychological distress scores. Compared with US and UK reports, our caregivers were predominantly married and reflected the national range of socioeconomic groups. Global rating of burden was significantly predicted by disruption of family routines and higher age of caregivers. The psychosocial burden of SCD can be significantly reduced by controlling the frequency and duration of crises, as well as providing adequate information and socioeconomic support to families. Hematology staff should be sensitive to the psychosocial dimensions of SCD.

Adolescent↗

[Estimating the burden of psychiatric disorder in Korea].

OBJECTIVES: This study estimated the burden of disease especially caused by psychiatric disorders in Korea by using DALY, a composite indicator that was recently developed by the Global Burden of Disease study group. METHODS: First, 11 of the major psychiatric disorders in Korea were selected based on the ICD-10. Second, the burden of disease due to premature death was estimated by using YLLs (years of life lost due to premature death). Third, for the calculation of the YLD (years lived with disability), the following parameters were estimated in the formula: the incidence rate, the prevalence rate and the disability weight of each psychiatric disorder. Last, we estimated the DALY of the psychiatric disorders by adding the YLLs and YLDs. RESULTS: The burden of psychiatric disorder per 100,000 people was attributed mainly to unipolar major depression (1,278 person-years), schizophrenia (638 person-years) and alcohol use disorder (287 person-years). For males, schizophrenia (596 person-years) and alcohol use disorder (491 person-years) caused the highest burden. For females, unipolar major depression (1,749 person-years) and schizophrenia (680 person-years) cause the highest burden. As analyzed by gender and age group, alcohol use disorder causes a higher burden than schizophrenia in men aged 40 years and older. For females, unipolar major depression causes the highest burden in all age groups. CONCLUSIONS: We found that each of the psychiatric disorders that cause the highest burden is different according to gender and age group. This study's results can provide a rational basis to plan a national health policy regarding the burden of disease caused by psychiatric disorders.

Adolescent↗

Antipsychotic agents: a survey of the prevalence, severity and burden of side effects.

We prospectively studied 64 male veteran out-patients with psychotic illnesses receiving one of six antipsychotic agents grouped by potency (low, mid, high, atypical) to determine: (1) prevalence of side effects; (2) cumulative side effect burden; and (3) relationship between side effects and patient-perceived burden. Patients were administered a questionnaire which included: (1) demographic information; (2) prevalence of 49 side effects; (3) visual analog scales (VAS) rating the severity of 10 selected side effects; and (4) overall side effect burden scale. Outcome measures included comparison of the prevalence, severity and overall burden of side effects among the potency groups (Part A); and association between side effect prevalence and burden, the correlation between severity and burden of certain side effects and demographic variables for the entire population (Part B). In Part A some unexpected similarities and differences were seen among data collected; few significant differences were found between groups. In Part B, 11 of 49 side effects (22%) were significantly associated with burden; the severity of 9 of 10 side effects (90%) and two demographic variables were significantly correlated with burden. These findings suggest that the prevalence and severity of many side effects of antipsychotic agents may affect a patient's perception of side effect-related burden. The side effect burden ratings suggest that the low-potency agents were the most burdensome, while the atypical group was the least burdensome.

Adult↗