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Epoetin alfa (Eprex) and quality of life.

Several recently published clinical trials in anaemic patients with cancer provide convincing evidence that the quality of life of such patients is considerably impaired and that a significant improvement in quality of life can be achieved if their anaemia is corrected by treatment with recombinant erythropoietin (epoetin alfa, Eprex). Findings of some of the major studies are summarised in this issue. These summaries have been prepared to make the findings more accessible to busy clinicians who may not have time to read longer reports in specialist journals but who need to understand the important clinical implications of this research.

Anemia↗

Myocardial infarction may induce positive changes in life-style and in the quality of life.

Eighty-four male patients with a mean age of 56.4 years were subjected to a semistructured interview 12-21 weeks after acute myocardial infarction. Twenty-eight individuals (group A) perceived a considerably or somewhat improved total life situation, 39 patients an unchanged (group B) and 17 patients (group C) a somewhat or considerably worsened total life situation. In all groups there were appreciable alterations with respect to stress on the job, physical activity and intake of fat/calories. Sixty per cent had reduced or quit smoking, and 19% had reduced their alcohol consumption. Fifty per cent of the patients perceived an increased gratitude at being alive. Similar recordings were found regarding "joy of life", value of hobbies, family and having good health. Concern associated with a reduced health status was experienced as the most distressing consequence of MI. There were no significant differences between groups A, B and C with respect to severity of the MI in contrast to the number of "psychiatric cases" (GHQ). The study concludes that it is considered important also to discover and reinforce possible positive changes after MI.

Adult↗

Removing life support: motivations, obligations. An opinion on NCCB Committee for Pro-Life Activities' statement on artificial hydration and nutrition.

In April 1992 the Committee for Pro-Life Activities of the National Conference of Catholic Bishops issued a resource paper titled "Nutrition and Hydration: Moral and Pastoral Reflections." At best, this document and its conclusions may be viewed as a pastoral statement, offering some tentative reasoning and conclusions to be considered in cases that concern the use of medically assisted nutrition and hydration. When discussing the question, is the withholding or withdrawing of medically assisted hydration and nutrition always direct killing? the document applies two principles--"no reasonable hope of benefit" and "involving excessive burdens." The document's crucial part is its admission that artificial hydration and nutrition may be removed without the intention of causing death, and that "this kind of decision should not be equated with a decision to kill or with suicide." The committee assigns decision-making responsibility to patients, families, and healthcare professionals, but continues its discussion for 20 pages and offers cautions conclusions concerning removal of such therapy. Two assumptions seem to underlie the document's overly cautious conclusions, the first being that mere vegetative function mandates continued life support. The first assumption overemphasizes the value of physiological functioning insofar as the purpose of human life is concerned. It also is contrary to the goal of medicine, which envisions restoration of cognitive-affective function as an element of successful therapy. The second assumption is that withdrawal of artificial hydration and nutrition from persons in PVS may lead to euthanasia. But mandating the continuation of nonbeneficial therapy simply because it prolongs physiological function seems to lead people to favor euthanasia rather than reject it.(ABSTRACT TRUNCATED AT 250 WORDS)

Catholicism↗

Characterising life-span variability in a population using the life-table-based Lorenz-curve analysis.

BACKGROUND: 'Life expectancy' (LE) is a health-status indicator in widespread use. However, LE is an index of central location, but not of dispersion. It cannot describe inter-individual variation in the life-span. This author proposes using the Gini coefficient, a summary index of the Lorenz curve, for characterising life-span variability. Like the LE, the proposed index is also based on a lifetable. METHOD: The method is a nonparametric approach that does not make specific assumptions about mortality rates. RESULTS: The author uses vital statistics from Taiwan as a demonstration and finds that the method provides information crucial to the understanding of the epidemiologic transitions of the past 20 years (Gini decreases from 0.1320 to 0.1130). It also quantifies the impacts of elimination of some selected causes of death in Taiwan. CONCLUSIONS: It is recommended that Gini be routinely compiled in official vital statistics, along with the LE.

Adolescent↗

Planning for the future: a life management strategy for increasing control and life satisfaction in adulthood.

The study examined the social, personality, and cognitive correlates of self-reported future planning and the relationship of future planning to perceived control and life satisfaction. Using 2 probability samples of adults ages 25-74 (n = 2,971, n2 = 300) findings suggest, for Study 1, that education, income, social support, predictability, Conscientiousness. and Openness to Experience were positively related to future planning, whereas Neuroticism and Agreeableness were negatively related. Men were more future oriented; as age increased, future planning decreased. Study 2 replicated the findings with the exception of age, Agreeableness, and Neuroticism. For both studies, results supported a model in which the effects of future planning on life satisfaction were mediated by sense of control. A Planning x Age interaction for Study I indicated that although self-reported future planning decreased with age, the positive effects of future-oriented planning strategies on life satisfaction were most pronounced for the older adults, and this relationship was also mediated by control beliefs.

Adult↗

Years of potential life lost and valued years of potential life lost in assessing premature mortality in Slovenia.

AIM: To determine the leading causes of death that contribute most to premature mortality in Slovenia; to classify premature mortality according to the cause of death, age, and sex; and to determine the age point before which premature mortality becomes a potential loss to the society. METHOD: Potential economic losses to society were estimated by use of years of potential life lost (YPLL), with a cut-off point at 65 years, and valued years of potential life lost (VYPLL) methods. We calculated the sex-, age-, and underlying causes of death-specific YPLL and VYPLL for residents of Slovenia who died at age younger than 65 years, using Slovene sex-specific life expectancy for 1998/1999 and age-specific weights of investment-producer-consumer model. RESULTS: In 1998, 4,558 YPLL per 100,000 population were lost to Slovenia. We found bimodal age distribution of YPLL, with the first peak in the 20-24 year age group and the second in the 45-49 year age group. Men to women rate ratio was 2.5. The leading causes of YPLL were external causes of death, followed by malignant neoplasms, and cardiovascular diseases. External causes, including suicides and traffic accidents, were the leading causes of death in men, whereas malignant neoplasms, including breast cancer and digestive cancer, were top-ranking causes in women. Among those, only external causes of death produced positive VYPLL, indicating a net loss to the society. CONCLUSION: In Slovenia, YPLL peaked in the 20-24 and 45-49 year age groups. Only external causes of death, most of which were preventable, accounted for the net economic loss to Slovenian society. We believe that YPLL and VYPLL, as specific mortality measures, can be reliably used in the evaluation of leading causes of death before age 65 and potential economic loss to the society caused by those deaths, and that they should be taken into account when setting public health priorities.

Adolescent↗

[Aging and life-history: aims and approaches to a life-span oriented gerontology].

The paper discusses the contributions of American theoretical and empirical approaches in life span developmental psychology to the understand of aging in a life-span frame of reference. The main part of the paper consists of a report on longitudinal as well as biographical studies on psychological and social development in adolescence, middle, and late adulthood which started at the Psychology Department of the University of Bonn in 1952 and are continued into the 80's. These studies point to close relationships between the social and psychological conditions in earlier and later periods of life and stress the relevance of promoting not only mental, but also social and effective-emotional competence for the coping with crisis situation in old age.

Adolescent↗

Life expectancy, comorbidity, and quality of life. A framework of reference for medical decisions.

The treatment of cancer in the elderly can benefit from increasingly sophisticated methods that measure a patient's quality of life. These measures are both general and cancer specific and herald a new and enlightened approach to patient care. The care of the older patient must be seen in light of what is known about life expectancy, the outcome of treatment, an awareness of comorbidity, and the importance of informed consent and respect for the values and preferences of the individual patient. This article reviews the growing literature on quality of life research in cancer patients.

Aged↗

Active life among the elderly in the United States: multistate life-table estimates and population projections.

Calculations of multistate life expectancy not only measure how long a population may live beyond a certain age, but also what fractions of this continuing lifetime will be spent in an independent or dependent status. Many Americans aged 70 and over are leading long, active lives; large numbers of individuals who become dependent, moreover, do so temporarily and return to independent status. Men and women have disparate total and active life expectancies, however, reflecting differential survival patterns and varying rates of transition among statuses. Policy makers must consider the increased size of the future elderly population, and changes in its age composition and functional status, when planning relevant health services.

Activities of Daily Living↗

Withdrawal of life support: intensive caring at the end of life.

The technology and expertise of critical care practice support patients through life-threatening illnesses. Most recover; some die quickly; others, however, linger--neither improving nor acutely dying, alive but with a dwindling capacity to recover from their injury or illness. Management of these patients is often dominated by the question: Is it appropriate to continue life-sustaining therapy? Patients rarely participate in these pivotal discussions because they are either too sick or too heavily sedated. As a result, the decision often falls to the family or the surrogate decision maker, in consultation with the medical team. Decisions of such import are emotionally stressful and are often a source of disagreement. Failure to resolve such disagreements may create conflict that compromises patient care, engenders guilt among family members, and creates dissatisfaction for health care professionals. However, the potential for strained communications is mitigated if clinicians provide timely clinical and prognostic information and support the patient and family with aggressive symptom control, a comfortable setting, and continuous psychosocial support. Effective communication includes sharing the burden of decision making with family members. This shift from individual responsibility to patient-focused consensus often permits the family to understand, perhaps reluctantly and with great sadness, that intensive caring may involve letting go of life-sustaining interventions.

Advance Directives↗

Development of quality of life questionnaire in Japan: quality of life assessment of cancer patients receiving chemotherapy.

The Japanese Quality of Life Research Group has developed a general questionnaire suitable for assessing the Quality of Life (QOL) in patients undergoing chemotherapy. The questionnaire covers four major categories: (1) daily activities, (2) physical condition, (3) social activities, and (4) mental and psychological status. The State-Trait Anxiety Inventory (STAI), Self-Rating Depression Scale (SDS), and Performance Status (PS) were used as external measures of quality of life and for the validation of our tool. On the basis of two basic surveys and two studies we selected 22 questions from a larger set of items. Validity and reliability were verified for the final 22-question form. This questionnaire, named the QOL Questionnaire for Cancer Patients Treated with Anticancer Drugs (QOL-ACD), can be used to detect changes in QOL over time. Its use as an additional outcome measure in Phase III chemotherapy trials should be encouraged.

Adult↗

How does Parkinson's disease affect quality of life? A comparison with quality of life in the general population.

BACKGROUND: Adequate provision of appropriate healthcare resources for patients with chronic neurologic disorders such as Parkinson's disease (PD) requires knowledge of the impact of the illness on their life. Quality of life (QoL) instruments measure the impact of the disease on general well-being that cannot be fully appreciated by clinical rating scales and allow comparisons with other patient groups and the general population. OBJECTIVES: To assess QoL in a population-based sample of patients with PD in different disease stages in comparison with the general population. METHODS: All 124 patients with PD seen in a population-based study on the prevalence of parkinsonism in the London area were asked to complete a QoL battery including the EuroQoL 5D (EQ-5D), the Medical Outcome Study Short Form (SF 36), and the 39-item Parkinson's Disease questionnaire (PDQ-39). An interview and complete neurologic examination, including the Hoehn and Yahr scale, were performed on the same day. The patients' QoL scores were compared with published QoL norms from the United Kingdom population. RESULTS: Quality of life, as measured by the PDQ-39, the EQ-5D, and the physical summary of the SF 36, deteriorated significantly with increasing disease severity. The greatest impairment was seen in the areas related to physical and social functioning, whereas reports of pain and poor emotional adjustment had similar prevalence in patients with PD and the general population. The impairment of QoL was seen in all age groups and was similar for men and women, but the differences between patients with PD and the general population were most marked in the younger patient groups. CONCLUSIONS: Parkinson's disease interferes with various aspects of QoL, particularly those related to physical and social functioning. This information should be taken into account in the clinical management and planning and allocation of healthcare resources to this population.

Adult↗

Quality of life of people with rheumatoid arthritis as measured by the World Health Organization Quality of Life Instrument, short form (WHOQOL-BREF): score distributions and psychometric properties.

OBJECTIVE: To assess the psychometric properties, including responsiveness, of the World Health Organization Quality of Life instrument, short form (WHOQOL-BREF) in people with rheumatoid arthritis. METHODS: A sample of 142 persons with rheumatoid arthritis were randomly selected from a regional disease register and completed questionnaires by postal survey. An additional sample of 72 consecutive inpatients completed questionnaires a few days prior to admission, the day of admission, the day of discharge, and 2 weeks following discharge. RESULTS: Test-retest reliability was adequate (intraclass correlation coefficient 0.71-0.91). Internal consistency was adequate except for the social relationships domain (Cronbach's alpha 0.64-0.87). Factor structure was fairly similar to that previously reported. Correlation with other measures of quality of life was supportive of concurrent validity. Indices of responsiveness were satisfactory except for the social relationships and environment domains, although there was actually no statistical difference in the area under a receiver operating characteristic plot between the WHOQOL-BREF domains and the Health Assessment Questionnaire. CONCLUSION: The WHOQOL-BREF has adequate psychometric properties in people with rheumatoid arthritis and should be considered a valid outcome measure for interventions that aim to improve quality of life for people with this disease.

Aged↗

Evaluating quality of life in hip and knee replacement: Psychometric properties of the World Health Organization Quality of Life short version instrument.

OBJECTIVE: To evaluate the psychometric properties of the World Health Organization Quality of Life short version instrument (WHOQOL-BREF), and to determine its responsiveness in assessing early outcome after total hip or knee replacement surgery. METHODS: At baseline (entry to an orthopedic waiting list), 279 participants completed the WHOQOL-BREF instrument, Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC), Assessment of Quality of Life (AQOL) instrument, Kessler Psychological Distress (K10) scale, and the modified Health Assessment Questionnaire (MHAQ). A total of 74 patients completed reassessments 3 months after surgery. RESULTS: The WHOQOL-BREF demonstrated acceptable internal consistency for all domains (Cronbach's alpha = 0.76-0.84) and moderate concurrent validity for the physical and psychological domains (r = 0.67 for physical versus AQOL; r = -0.71 for psychological versus K10). Minimal ceiling or floor effects were identified at baseline or 3 months, except for the social relationships domain. The disease-specific WOMAC subscales were most responsive to change (relative efficiency [RE] 0.66-1.00). Apart from social relationships, all WHOQOL-BREF scores improved significantly after surgery. The physical domain was more responsive than the AQOL (RE 0.50 versus 0.42) and was similar to the MHAQ (RE 0.55 for MHAQ). The responsiveness of the psychological domain was similar to that of the K10 scale (RE 0.11 versus 0.08). CONCLUSION: The WHOQOL-BREF has good psychometric properties for use in persons with severe joint disease, and by providing complementary information, it offers clinicians and researchers an additional tool for comprehensively assessing quality of life in this patient group.

Aged↗

Productive behavior through the life course: an essay on the quality of life.

Present patterns of productive activity are neither well recognized, optimal for society, nor in accordance with individual preference. Although a great deal of attention has been given to meeting people's needs for income, medical care, and other services, the quality of their lives must also be defined by what they do for themselves and for others. In discovering present patterns of productive activity throughout the life course and optimizing those patterns, we will raise the quality of American life. To accomplish this task, two great changes are needed: we must recognize the full range of productive activities throughout the life course and give people the opportunity to modify the allocation of paid employment.

Employment↗

How well does the Canadian Haemophilia Outcomes-Kids' Life Assessment Tool (CHO-KLAT) measure the quality of life of boys with haemophilia?

BACKGROUND: It is important to measure the quality of life (QoL) of boys with haemophilia, because the diagnosis has a significant impact on their lives and this impact fluctuates over time. A disease-specific measure of QoL is required because the aspects of life that are affected by haemophilia may differ from those assessed by generic QoL measures. This paper describes the final phase of development of a disease-specific measure of QoL for boys with haemophilia: the Canadian Haemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT). PROCEDURE: A 79-item version of the CHO-KLAT was administered to 52 children. A detailed item analysis was conducted to shorten the CHO-KLAT. The reliability of the revised version was assessed using intraclass correlation coefficients. Validity was assessed by comparing it to the PedsQL and the HaemoQoL. RESULTS: The item analysis resulted in the retention of 35 strongly performing items (CHO-KLAT(35)). These items were aggregated into the CHO-KLAT(35) summary score. Repeated measures reliability of the CHO-KLAT(35) was 0.74 for children and 0.83 for parents, and the child-parent concordance was 0.75. The validity of the CHO-KLAT(35) was confirmed by a correlation of 0.78 with the Haemo-QoL and of 0.59 with the PedsQL. CONCLUSIONS: The CHO-KLAT(35) is a reliable and valid measure of QoL for boys with haemophilia.

Adolescent↗

Assessment of health-related quality of life of adolescent cancer patients using the Minneapolis-Manchester Quality of Life Adolescent Questionnaire.

BACKGROUND: Improved survival after childhood cancer has shifted the focus to health-related quality of life (HRQL)-an understudied problem, especially among adolescents. PROCEDURE: We assessed HRQL among adolescents utilizing a validated self-report tool, the Minneapolis-Manchester Quality of Life (MMQL) Adolescent Form, consisting of 46 items comprising seven domains: physical, cognitive, psychological and social functioning, body image, intimate relations, and outlook on life, and computed an overall QoL score. The MMQL Adolescent Form was administered to 226 adolescent survivors of childhood cancer a median of 7.8 years from diagnosis (off therapy-median age: 16.2 years), 136 adolescent cancer patients undergoing therapy (on therapy-median age: 16.4 years), and 134 healthy adolescents (controls-median age: 15.5 years). Primary diagnoses included leukemia (46%), lymphoma (26%), brain tumors (5%), and other solid tumors (23%). RESULTS: Compared to healthy controls, on-therapy patients were at increased risk for reporting poor overall QoL [Odds Ratio (OR) = 3.3, P = 0.002)] and poor physical functioning (OR = 11.8, P < 0.001). Off-therapy survivors did not differ significantly from healthy controls for overall QoL (OR = 1.6, P = 0.5) or any HRQL domains. Female patients, both on- and off-therapy, were more likely to report poorer overall QoL, physical, psychological and cognitive functioning as well as poorer body image when compared with male patients. CONCLUSIONS: While adolescent cancer patients undergoing active therapy report poor physical functioning, there is no evidence of long-term QoL sequelae.

Adolescent↗

Quality of life in young people: ratings and factor structure of the Quality of Life Profile-Adolescent Version.

The purpose of the study was to provide British data relating to the 54-item Quality of Life Profile Adolescent Version (QOLPAV; Raphael et al., 1996, Journal of Adolescent Health, 19, 366-375) and to explore the underlying factor structure of the questionnaire. The relationship between demographic variables (such as social economic status, gender and ethnicity) and quality of life (QOL) were investigated. Eight hundred and ninety-nine young people aged 12-16 were recruited from secondary schools in the south of England to participate in the study. Factor analysis highlighted eight dimensions embedded within the scale, which were largely consistent with the QOL model proposed by Raphael et al. (1996, Journal of Adolescent Health, 19, 366-375). A notable exception concerned items from the subdomain of "spiritual being", which did not cluster together but dispersed across multiple factors. Exclusion of complex items and those with low loadings on subdomains resulted in a briefer scale consisting of 32 items. Of the demographic variables examined, only age was significantly associated with quality of life scores.

Adolescent↗