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PubMed1996

The Total Ischaemic Burden European Trial (TIBET). Effects of atenolol, nifedipine SR and their combination on the exercise test and the total ischaemic burden in 608 patients with stable angina. The TIBET Study Group.

OBJECTIVES: To determine the effects of atenolol, nifedipine and their combination on exercise parameters and ambulatory ischaemic activity in patients with mild chronic stable angina. SETTING: Multicentre, multinational study involving 608 patients from 69 centres in nine countries. DESIGN: Placebo washout followed by double-blind parallel-group study comparing atenolol 50 mg bd, nifedipine SR 20 mg bd, and their combination. Patients underwent maximal exercise testing using either a bicycle (n = 289) or treadmill (n = 319) and 48 h of ambulatory ST segment monitoring outside the hospital environment at the end of the placebo washout period and after 6 weeks of active therapy. RESULTS: Both medications alone and in combination caused significant improvements in exercise parameters and significant reductions in ischaemic activity during daily activities, when compared with placebo. There were, however, no significant differences between groups, for any of the measured ischaemic parameters although combination therapy resulted in a greater fall in resting systolic and diastolic blood pressure than either treatment alone. CONCLUSIONS: In the management of mild chronic stable angina there appears to be little advantage gained from using combination therapy for ischaemia reduction.

Adrenergic beta-Antagonists↗
PubMed1998

Burden of illness of multiple sclerosis: Part II: Quality of life. The Canadian Burden of Illness Study Group.

OBJECTIVE: To measure the quality of life (QoL) of multiple sclerosis (MS) patients in Canada using a generic QoL instrument, the SF-36. METHODS: QoL was assessed in 198 MS patients, recruited from 14 MS Clinics in Canada, and stratified into three levels of disease severity, based on their Expanded Disability Status Scale (EDSS) score. Statistical tests were used to compare QoL scores between severity groups and to identify possible relationships between QoL and patient sociodemographic, clinical and economic parameters. RESULTS: QoL scores for all eight scales of the SF-36 were substantially reduced early in the disease. Compared to the normal population, QoL scores for patients with mild MS were on average 30% lower for all SF-36 scales. With EDSS progression a statistically significant decrease in three of the SF-36 domains (physical function, role-physical, and social function) was observed. There were no significant correlations between patient parameters considered and QoL scores. CONCLUSIONS: QoL of MS patients collapses early in the disease. With EDSS progression, physical functioning scales show further decreases in QoL. The absence of further changes in the mental SF-36 scales may be a reflection of patient adaptation to the disease and/or effective support care. However, the SF-36 instrument may be insensitive to some of the QoL changes in MS and a disease-specific instrument may provide additional information on QoL, particularly at later stages of the disease. This study provides a basis for future research aimed at improving management of MS.

Adult↗
PubMed2001

Depression burden, self-help interventions, and side effect experience in women receiving treatment for breast cancer.

PURPOSE/OBJECTIVES: To describe effects of a set of Self-Help Intervention Project (SHIP) interventions with self-reported depression burden on the side effect experience of women receiving treatment for breast cancer. DESIGN: Repeated measures, experimental design. SETTING: Outpatient sites at a regional cancer center, private practices, and health maintenance organizations. SAMPLE: 169 women who completed data at all three data-collection points were used to answer the research questions. METHODS: Following random assignment, individuals in the treatment group participated in five different, but complementary, self-help interventions for six weeks. The control group received the usual care. Variables were measured at baseline after radiation, chemotherapy, or hormone therapies were started to allow for the side effects to emerge at six to eight weeks after treatment and three months following time 2. MAIN VARIABLES: Depression burden, fatigue burden, pain burden, nausea burden, difficulty concentrating burden, anxiety burden, number of side effects, severity of side effects, and participation in the interventions. FINDINGS: Self-reported depression burden was found to significantly influence severity of side effects, number of side effects, and the burdens of fatigue, difficulty concentrating, and anxiety. Depression burden did not significantly influence the side effect burdens of nausea or pain. Depression burden interacted with the self-help interventions over time for the side effect of fatigue, but the intervention effect on pain burden and nausea burden was not influenced by depression burden over time. No significant intervention effects were found for the burden of difficulty concentrating or anxiety, the number of side effects, or perceived severity of side effects. The interventions significantly reduced the fatigue, pain, and nausea burden in women with breast cancer. CONCLUSIONS: The interventions were particularly helpful, relative to their fatigue experience, for women reporting a high level of depression burden. Findings also contribute to conceptual clarification of essential aspects of the side effect experience and provide a basis for measure and intervention refinement. IMPLICATIONS FOR NURSING PRACTICE: Every woman who is undergoing cancer treatment should be assessed for depression and depression burden. Self-help interventions are effective and convenient treatments that reduce side effects and promote quality of life in women with breast cancer.

Adaptation, Psychological↗
PubMedDate not supplied

[Caregiver burden in relatives of persons with schizophrenia: an overview of measure instruments].

The high prevalence and chronic evolution of schizophrenia are responsible for a major social cost. The adverse consequences of such psychiatric disorders for relatives have been studied since the early 1950s, when psychiatric institutions began discharging patients into the community. According to Treudley (1946) "burden on the family" refers to the consequences for those in close contact with a severely disturbed psychiatric patient. Grad and Sainsbury (1963) and Hoenig and Hamilton (1966) developed the first burden scales for caregivers of severely mentally ill patients, and a number of authors further developed instruments trying to distinguish between "objective" and "subjective" burden. Objective burden concerns the patient's symptoms, behaviour and socio-demographic characteristics, but also the changes in household routine, family or social relations, work, leisure time, physical health.... Subjective burden is the mental health and subjective distress among family members. While the first authors referred to those problems which are deemed to be related to, or caused by the patient, Platt et al. (1983) tried to distinguish between the occurrence of a problem, its alleged aetiology, and the perceived distress, when developing the SBAS questionnaire. These authors also proposed separate evaluations of behavioral disturbance and social performance by relatives, and a report of extra-disease stressors in family life. The SBAS is actually the most complete, but also complex instrument for evaluating burden in caregivers. Since 1967 Pasamanick and others proposed questionnaires for burden evaluation in relatives of schizophrenic patients. Relatives may be included in specific psychoeducational programs, but few of these programs have been evaluated in terms of caregiver burden. The theoretical approach in schizophrenia was not different from that one adopted in mentally ill population. Some instruments were validated first in a mentally ill group and then adapated for schizophrenic population. This paper describes the available data about intruments measuring caregiver burden in relatives of schizophrenic patients. Measures are summarized according to purpose, content and psychometric properties. Sixteen instruments have been collected from the litterature (1955-2001), and 2 instruments developed for relatives of mentally ill have also been taken into account. A group of 5 instruments focuses on the measurement of behavioural disturbance in persons with schizophrenia as perceived by their family members. Eleven scales include behavioural disturbance in a more complete decription of objective burden. Thirteen questionnaires also report the subjective distress in caregivers. One instrument has been developed in french language. Few of these instruments have been developed from a verbatim and really describe the caregiver's point of view. Most of them rely on experts point of view or on previously published studies. The content and domains explored by these instruments are variable. The psychometric properties are poorly documented for a number of them and no information is published about responsiveness. Some validated instruments are the Perceived Family Burden Scale (PFBS) the Involvement Evaluation Questionnaire (IEQ) and the Experience of Caregiving Inventory (ECI). In past studies, researchers more or less agreed about the dimensions that comprise the family burden. There was less agreement with regard to the definition of objective and subjective burden, and quite no agreement about the theoretical approach to the concept of burden. The evaluation of behavioural disturbance should now be excluded from the objective burden dimension. It is a specific domain, both objective and subjective, which can be described as a stressor in the stress-appraisal-coping model. A good approach of this domain can be found in the PFBS. It comprises 24 items and the principal components analysis produces 2 factors ("active" and "passive"), explaining 35% of the variance, with good consitency and acceptable test-retest reliability. The evaluation is both objective (presence or absence) and subjective (induced distress). The Behavior Disturbance Scale (BDS) may also be taken into account, although it is less validated. This scale derives from the SBAS, modified as a self-questionnaire, with both objective and subjective evaluations of all items. The concept of burden was recently modified in a new theoretical approach by Schene, when developing the IEQ. According to this author, the burden scale is supposed to exclude stressors (patient's behaviors), as well as outcome variables (distress or psychological impairment in caregiver). The "caregiving consequences" section comprises 36 items, which focus on the subjective aspects of the caregiver's experience. Principal component factor analysis generates 4 factors which explain 45% of the variance: tension, supervision, worrying, urging. The overall caregiving score substantially explains the connection between patient, caregiver, relationship variables and the caregiver's distress. This scale is a valid and simple instrument for caregiving eveluation The ECI also introduces a new approach of caregiving and rejects the notion of burden. The 66 item version is composed of 10 factors (8 "negative" and 2 "positive") with good internal consistency. The introduction of two positive factors (rewarding personal experiences, good aspects of the relationship with the patient) might be the basis of a useful outcome measure for intervention aimed at promoting caregiver well-being. Nevertheless, the authors fail to develop an overall score that includes these factors, and focus on the negative dimensions as predictors of morbidity and well-being. None of the variables included in the regression model explain a significant percent of the variance of the ECI positive score. None of these instruments was employed for evaluating programs or treatments, even psychoeducational programs for caregivers. This may be partly due to the lack of data about sensitivity to change. No instrument is now available for evaluating therapeutics from the caregiver's point of view. Developing such an instrument is necessary, in view of the increasing role of families in care for schizophrenic patients. These data and the review of the literature leeds us to propose the development of a self-administered questionnaire for evaluating subjective health-related quality of life in caregivers of schizophrenic patients. The instrument should be developed from the caregiver's point of view and be derived from qualitative interviews with relatives of patients suffering from schizophrenia. It's responsiveness should be documented before inclusion in clinical trials or evaluation of psychoeducational programs. We are now working with the National Union of Friends and Families of Patients to validate an instrument in french language.

Caregivers↗
PubMed2005

The burden on informal caregivers of people with bipolar disorder.

Caregivers of people with bipolar disorder may experience a different quality of burden than is seen with other illnesses. A better understanding of their concerns is necessary to improve the training of professionals working with this population. Conceptualizing caregiver burden in a conventional medical framework may not focus enough on issues important to caregivers, or on cultural and social issues. Perceptions of caregivers about bipolar disorder have important effects on levels of burden experienced. It is important to distinguish between caregivers' experience of this subjective burden and objective burden as externally appraised. Caregivers' previous experiences of health services may influence their beliefs about the illness. Caregiver burden is associated with depression, which affects patient recovery by adding stress to the living environment. The objective burden on caregivers of patients with bipolar disorder is significantly higher than for those with unipolar depression. Caregivers of bipolar patients have high levels of expressed emotion, including critical, hostile, or over-involved attitudes. Several measures have been developed to assess the care burden of patients with depressive disorders, but may be inappropriate for patients with bipolar disorder because of its cyclical nature and the stresses arising from manic and hypomanic episodes. Inter-episode symptoms pose another potential of burden in patients with bipolar disorder. Subsyndromal depressive symptoms are common in this phase of the illness, resulting in severe and widespread impairment of function. Despite the importance of assessing caregiver burden in bipolar disorder, relevant literature is scarce. The specific effects of mania and inter-episode symptoms have not been adequately addressed, and there is a lack of existing measures to assess burden adequately, causing uncertainty regarding how best to structure family interventions to optimally alleviate burden. The relatively few studies into caregiver burden in bipolar disorder may largely reflect experiences in the US Veterans Affairs health service, but the findings may be limited in their generalizability. Nevertheless, available data suggest that caregiver burden is high and largely neglected in bipolar disorder. Clinically effective, well-targeted and practically viable interventions are needed. However, services cannot be enhanced on a rational basis without an improved understanding and capacity to measure and target caregiver burden the impact of any change in services be evaluated.

Affect↗
PubMed1997

Positive and negative symptom behaviors and caregiver burden in the relatives of persons with schizophrenia.

OBJECTIVE: The relationships of perceived severity and responsibility attribution for positive and negative symptom behaviors to caregiver burden were investigated. Two types of burden were studied: objective burden (i.e., negative consequences such as physical problems, financial difficulties, and household tension), and subjective burden (i.e., emotional distress about disturbing behaviors). METHOD: Self-report measures were completed by 70 primary caregivers of persons with schizophrenia. RESULTS: Subjective burden was related to both the severity of positive and negative symptom behaviors, whereas objective burden was related only to the severity of negative symptom behaviors. Responsibility attribution for negative symptom behaviors was related only to objective burden. Caregivers who perceived patients as being less responsible for their negative symptom behaviors reported higher levels of objective burden. The relationship between responsibility attribution for negative symptom behaviors and objective burden remained significant, even after controlling for the severity of negative symptom behaviors. Caregivers' perceptions of patients' responsibility for positive symptom behaviors were not related to objective burden. CONCLUSIONS: As expected, perceived severity of negative symptom behaviors was related to objective caregiver burden, whereas severity of positive symptom behaviors was not. These findings suggest that negative symptoms may have a greater impact on role functioning that positive symptoms, leading to greater burden. However, contrary to expectations, less responsibility attribution for negative symptom behaviors was related to higher levels of objective caregiver burden. Caregivers who perceive patients as incapable of altering their negative symptom behaviors and meeting certain role obligations may assume extra responsibilities, leading to higher levels of objective burden. The results indicate that there may be disadvantages for caregivers associated with assuming that patients have no control over their negative symptom behaviors.

Adult↗
PubMed2000

Using epidemiological data to model efficiency in reducing the burden of depression*

BACKGROUND: The Global Burden of Disease study has suggested that mental disorders are the leading cause of disability burden in the world. This study takes the leading cause of mental disorder burden, depression, and trials an approach for defining the present and optimal efficiency of treatment in an Australian setting. AIMS OF THE STUDY: To examine epidemiological and service use data for depression to trial an approach for modelling (i) the burden that is currently averted from current care, (ii) the burden that is potentially avertable from a hypothetical regime of optimal care, (iii) the efficiency or cost-effectiveness of both current and optimal services for depression and (iv) the potential of current knowledge for reducing burden due to depression, by applying the WHO five-step method for priorities for investment in health research and development. METHODS: Effectiveness and efficiency were calculated in disability adjusted life years (DALYs) averted by adjusting the disability weight for people who received efficacious treatment. Data on service use and treatment outcome were obtained from a variety of secondary sources, including the Australian National Survey of Mental Health and Wellbeing, and efficacy of individual treatments from published meta-analyses expressed in effect sizes. Direct costs were estimated from published sources. RESULTS: Fifty-five percent of people with depression had had some contact with either primary care or specialist services. Effective coverage of depression was low, with only 32% of cases receiving efficacious treatment that could have lessened their severity (averted disability). In contrast, a proposed model of optimal care for the population management of depression provided increased treatment contacts and a better outcome. In terms of efficiency, optimal care dominated current care, with more health gain for less expenditure (28 632 DALYs were averted at a cost of AUD295 million with optimal care, versus 19 297 DALYs averted at a cost of AUD720 million with current care). However, despite the existence of efficacious technologies for treating depression, only 13% of the burden was averted from present active treatment, primarily because of the low effective coverage. Potentially avertable burden is nearly three times this, if effective treatments can be delivered in appropriate amounts to all those who need it. DISCUSSION: This paper reports a method to calculate the burden currently averted from cross-sectional survey data, and to calculate the burden likely to be averted from an optimal programme estimated from randomized controlled trial data. The approach taken here makes a number of assumptions: that people are accurate in reporting their service use, that effect sizes are a suitable basis for modelling improvements in disability and that the method used to translate effect sizes to disability weight change is valid. The robustness of these assumptions is discussed. Nonetheless it would appear that while optimal care could do more than present services to reduce the burden of depression, current technologies for treating depression are insufficient. IMPLICATIONS FOR HEALTH CARE PROVISION AND USE: There is an urgent need to educate both clinicians (primary and specialist) and the general public in the effective treatments that are available for depression. IMPLICATIONS FOR HEALTH POLICIES: Over and above implementing treatments of known efficacy, more powerful technologies are needed for the prevention and treatment of depression. IMPLICATIONS FOR FURTHER RESEARCH: Modelling burden averted from a variety of secondary sources can introduce bias at many levels. Future research should examine the validity of approaches that model reductions in disability burden. A powerful treatment to relieve depression and prevent relapse is needed.

Journal Article↗
PubMedDate not supplied

Burden experienced by caregivers of relatives with dementia in Taiwan.

BACKGROUND: The burden produced by caring for relatives with dementia is an increasing problem in the United States and Taiwan, necessitating a better understanding of the interrelationships of the factors that influence burden. OBJECTIVES: To test a theoretical model specifying how the demands of care, filial obligation, caregiving self-efficacy, coping strategies, and caregiving involvement affect caregiver burden. METHOD: A descriptive cross-sectional design with a convenience sample (n = 150) from outpatient clinics of three hospitals in Taiwan was used. The Caregiver Burden Inventory and the Cost of Care Index assessed caregiver burden. The antecedents of burden were assessed by the Physical Self-Maintenance Scale, Instrumental Activities of Daily Living, the Mini-Mental State Examination, the Revised Memory and Behavior Problem Checklist, the Montgomery obligation subscale, Cicirelli's obligation scale, the Caregiving Self-efficacy Scale, the Caregiving Involvement Scale, and the Ways of Coping Questionnaire. RESULTS: The original model did not fit the data well but minor respecifications produced a good model as evidenced by a chi2/df ratio of 2.1, a goodness-of-fit index of .89, and a comparative fit index of .93. Demands of care on the caregiver and filial obligation had direct positive effects on caregiving involvement. Caregiving involvement and emotion-focused coping had direct positive effects on caregiving burden. Filial obligation, caregiving self-efficacy, and problem-focused coping had direct negative effects on caregiving burden. Six of the seven original hypothesized structural relationships were confirmed in the final model. CONCLUSIONS: The Burden Model tested in this study corroborates findings from other burden studies and extends our knowledge of caregiver burden. Filial obligation, self-efficacy, demands of care, involvement in care, and coping were shown to predict burden in this sample of Taiwanese caregivers. Future study is needed to evaluate interventions designed for family caregivers of persons with dementia. Especially needed is research in the area of counseling and mental health services to assist caregivers in dealing with manifestations of burden.

Activities of Daily Living↗
PubMed1999

Side-effects burden, psychological adjustment, and life quality in women with breast cancer: pattern of association over time.

PURPOSE/OBJECTIVES: To describe the side-effects burden experienced over time by 53 women who were receiving treatment for breast cancer and to describe the association of side-effects burden with psychological adjustment and life quality. DESIGN: Data were drawn from the Self-Help Intervention Project (SHIP), an intervention study designed to test the effectiveness of nursing interventions for women receiving treatment for breast cancer. SETTING: Subjects were interviewed in their homes or treatment locations three times over a period of four to five months. SAMPLE: 53 women randomly assigned to the control group of the SHIP. METHODS: The researchers collected data after treatment was initiated, six to eight weeks later, and three months after that. MAIN RESEARCH VARIABLES: Side-effects burden, psychological adjustment, and life quality. FINDINGS: Fatigue was the most problematic side effect over time. Other problematic side effects included sore arm(s), difficulty sleeping, hair loss, and skin irritation. Significant associations were evident for psychological adjustment with symptom extension and number of side effects at Time 2 and Time 3. Depression burden and anxiety burden were associated significantly with psychological adjustment at all three times. Overall life quality and present life quality was associated negatively with symptom extension and number of side effects at all three times. Fatigue burden was associated negatively with life quality at Time 2 and Time 3 with depression burden and anxiety burden negatively associated with life quality at all three times. CONCLUSIONS: Over time, evidence showed that negative feelings, in particular depression burden and anxiety burden, persist. Depression burden and anxiety burden each were negatively associated with overall and present life quality at all three times. IMPLICATIONS FOR NURSING PRACTICE: A need exists for clinically individualized nursing interventions that will reduce the side effects burden of women receiving treatment for breast cancer. Interventions can do much to reduce the perception of illness severity so that psychological adjustment and life quality can be maintained.

Adaptation, Psychological↗
PubMedDate not supplied

[Different approaches to the concept of family burden in schizophrenia].

This paper explores selected theoretical and experimental issues related to the notion of burden. The burden is a phenomenon which appears not only inside families with diagnosed schizophrenia but also in families of people presenting a different kind of psychic disorder or those being mentally handicapped. Using the term "family burden" is not usually followed by such operationalization of the notion, that would unable its investigation in the family system. Research does not say which sociodemographic and psychosocial factors have a decisive impact on the level of the noticeable burden. It seems, however, that a minor role should be attributed now to sociodemographic factors, while methods of overcoming the problems are the most significant. Findings let us think that objective factors composing the burden are individually judged by care givers who work with people with psychic disorders. This evaluation decides how important a specific factor is. This situation makes us reconsider the traditional division of the objective and subjective burden. The symptoms that might be noticed with the patients are not the only predictors of the burden. The source of care givers' burden is not directly connected with the psychopathological symptoms but rather with a deficit in a patient's sphere of functioning. While analysing the burden inside families of patients with psychic disorders it should be remembered that the reason can be not only problems related directly to the illness but also a number of unspecific factors saddling the family like unemployment, poor living conditions, difficulties at work, at school etc. Findings presented in this article disclose a poor precision of existing burden definitions resulting from a lack of a consistent conception of this phenomenon. The author attracts our attention to socio-cultural conditioning of the burden and shows how people with mental disorders positively contribute to family life. Nowadays the classical concept of the burden is more often replaced by stress management models. In the conclusion the author points out that the research on burden conducted so far is rather insufficient.

Adaptation, Psychological↗