Beyond disability: measuring the social and personal consequences of osteoarthritis.
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OBJECTIVE: Measuring the impact of osteoarthritis has traditionally focused on the disease (measures of impairment), functional disability and latterly, general health status or quality of life. This paper highlights the importance of measuring the wider personal and social consequences of OA both at a population and an individual patient level. DESIGN: The World Health Organisation definition of handicap is used to describe this wider impact of disease and measures of handicap, both generic and disease-specific are reviewed. The measurement of handicap in OA is illustrated by the use of the Disease Repercussion Profile in a clinical trial of orthopaedic out-patients with OA and low back pain. These data are compared to routine clinical handicap data collected on consecutive patients with rheumatoid arthritis attending a different outpatient clinic. RESULTS: OA patients reported handicap in six areas of their lives: functional and social activities, relationships, socio-economic status, emotional well-being and body image. The prevalence was similar to that reported by RA patients. OA patients reported more severe handicap than RA patients in each of the 6 areas (F ratios 4. 97-55.67) and the differences were statistically significant (P values 0.03-0.0001) for all dimensions except functional and social handicap. The LBP patients scored slightly more severe handicap on all dimensions than the OA patients but these differences did not reach statistical significance. However, they scored significantly more severe handicap than the RA patients (F ratios 8.49-174.72, P< 0.0001). CONCLUSIONS: These data suggest that the psychosocial impact of OA may have been underestimated and highlight the importance of going beyond disability in assessing the impact of OA. Measurement of the wider impact of OA can be achieved using disease-specific and generic measures of handicap. The choice of tool will depend upon the setting (research or clinical practice) and the purpose of measurement. (+info)
Quality of epilepsy treatment and services: the views of women with epilepsy.
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In three focus group discussions, 18 women with epilepsy were asked about their experiences of and satisfaction with care and treatment at both primary and secondary care, and for views on how epilepsy services might be improved. A fourth focus group was held with six epilepsy nurse specialists to seek their opinions on the service needs of women with epilepsy. Criticisms of services identified by both the women and nurses typically concerned four areas of care; organisation of services, technical competence, information provision and interpersonal skills, and health outcomes. Specific criticisms in each area included: lack of continuity of care and shared care; poor provision of information about side-effects of antiepileptic drugs (AEDs) and their effect on the contraceptive pill; and apparently haphazard prescribing of AEDs with consequent serious side-effects. Recommendations for improvements in services and treatment for people with epilepsy are suggested. (+info)
Health-related quality of life (HRQOL), activity of daily living (ADL) and depressive mood disorder in temporal lobe epilepsy patients.
(75/17899)
We determined the interrelations of chronological age, age at seizure onset, duration of seizure disorder, cognitive functioning (IQ), scales of activities of daily living, depressive mood disorder and measures of health-related quality of life (HRQOL). Furthermore, we investigated the association of the laterality of seizure onset zone and absence/presence of hippocampal atrophy and/or sclerosis (HA/HS) with measures of HRQOL, activities of daily living (ADL) and depressive mood disorder. In the setting of pre-surgical epilepsy evaluation, a sample of 56 patients with temporal lobe epilepsy (TLE) was studied using the Bonner Skalen fur Epilepsie (BPSE) and the depression inventory D-S of von Zerssen. Patients reported high levels of dependency on others and poor coping capabilities. Our data also showed specific ADL-behaviour suggesting social withdrawal and isolation. Our results indicate emotional impairment as a major problem in TLE, because 45% of our patients scored in the depressive range of the D-S depression scale. Depression score was found to be a powerful predictor of self-reported quality of life after adjusting for seizure-related variables, demographic variables and cognitive functioning (IQ). The only scale showing a significant laterality effect was ADL-home. No relationship between the dependent measures of HRQOL, ADL-social, ADL-cultural, depressive mood disorder and laterality of the epileptogenic zone or absence/presence of HA/HS was found. HRQOL and depressive mood disorder are strongly interrelated indicating that patients with depressive symptoms report lower quality of life and specific patterns of ADL. HRQOL, ADL and depressive mood disorder are largely independent of biological markers such as laterality of seizure onset zone and absence/presence of HA/HS in TLE. (+info)
Human cloning and child welfare.
(76/17899)
In this paper we discuss an objection to human cloning which appeals to the welfare of the child. This objection varies according to the sort of harm it is expected the clone will suffer. The three formulations of it that we will consider are: 1. Clones will be harmed by the fearful or prejudicial attitudes people may have about or towards them (H1); 2. Clones will be harmed by the demands and expectations of parents or genotype donors (H2); 3. Clones will be harmed by their own awareness of their origins, for example the knowledge that the genetic donor is a stranger (H3). We will show why these three versions of the child welfare objection do not necessarily supply compelling reasons to ban human reproductive cloning. The claim that we will develop and defend in the course of our discussion is that even if it is the case that a cloned child will suffer harms of the type H1-H3, it is none the less permissible to conceive by cloning so long as these cloning-induced welfare deficits are not such as to blight the existence of the resultant child, whoever this may be. (+info)
Beware! Preimplantation genetic diagnosis may solve some old problems but it also raises new ones.
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Preimplantation genetic diagnosis (PIGD) goes some way to meeting the clinical, psychological and ethical problems of antenatal testing. We should guard, however, against the assumption that PIGD is the answer to all our problems. It also presents some new problems and leaves some old problems untouched. This paper will provide an overview of how PIGD meets some of the old problems but will concentrate on two new challenges for ethics (and, indeed, law). First we look at whether we should always suppose that it is wrong for a clinician to implant a genetically abnormal zygote. The second concern is particularly important in the UK. The Human Fertilisation and Embryology Act (1990) gives clinicians a statutory obligation to consider the interests of the future children they help to create using in vitro fertilisation (IVF) techniques. Does this mean that because PIGD is based on IVF techniques the balance of power for determining the best interests of the future child shifts from the mother to the clinician? (+info)
Prenatal diagnosis and discrimination against the disabled.
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Two versions of the argument that prenatal diagnosis discriminates against the disabled are distinguished and analysed. Both are shown to be inadequate, but some valid concerns about the social effects of prenatal diagnosis are highlighted. (+info)
Use of nursing home after stroke and dependence on stroke severity: a population-based analysis.
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BACKGROUND AND PURPOSE: There are few population-based data available regarding nursing home use after stroke. This study clarifies the use of a nursing home after stroke, as well as its dependence on stroke severity, in a defined population. METHODS: All first stroke events among residents of Rochester, Minn, during 1987-1989 were ascertained, subtyped, and assigned Rankin disability scores (RS) before the event, at maximal deficit, and at specified intervals after stroke. Persons were followed from the date of stroke event to death, emigration from Rochester, or December 31, 1994, in complete community-based medical records and Minnesota Case Mix Review Program data tapes to determine nursing home residency before stroke and at 90 days and 1 year after stroke, proportion of survival days in a nursing home, and cumulative risk of admission to a nursing home. RESULTS: There were 251 cases of first cerebral infarction, 24 intracerebral hemorrhages, and 15 subarachnoid hemorrhages among residents of Rochester during 1987-1989. The maximal deficit RS was 1 or 2 for 62 (25%), RS 3 for 72 (29%), and RS 4 or 5 for 117 (47%) of the cerebral infarct patients. Among patients surviving to 90 days or 1 year after cerebral infarction, 25% were in nursing home at 90 days and 22% at 1 year, respectively. Within these maximal deficit RS categories, the percentages of follow-up time spent in a nursing home during the first post-cerebral infarction year are as follows: RS 1 to 2, 4%; RS 3, 10%; and RS 4 to 5, 54%. Multivariate logistic regression revealed that increasing age and RS 4 to 5 at maximal deficit were independent predictors (P<0.0001) of nursing home residency at 90 days and 1 year after stroke, whereas stroke type was not an independent predictor. At 1 year after cerebral infarction, the Kaplan-Meier estimates of proportion of people with at least 1 nursing home admission were 11% for RS 1 to 2, 22% for RS 3, and 68% for RS 4 to 5. CONCLUSIONS: This study provides unique population-based data regarding the short- and long-term use of a nursing home after stroke and its dependence on stroke severity. More than 50% of people with a severe cerebral infarction are in a nursing home 90 days and 1 year after the stroke, and by 1 year, nearly 70% will have required some nursing home stay. Age and stroke severity are independent predictors of nursing home residency after stroke. (+info)
Clustered randomised trial of an intervention to improve the management of asthma: Greenwich asthma study.
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OBJECTIVES: To evaluate the effectiveness of an asthma resource centre in improving treatment and quality of life for asthmatic patients. DESIGN: Community based randomised controlled trial. SETTING: 41 general practices in Greenwich with a practice nurse. SUBJECTS: All registered patients aged 15-50 years. INTERVENTION: Nurse specialists in asthma who educated and supported practice nurses, who in turn educated patients in the management of asthma according to the British Thoracic Society's guidelines. MAIN OUTCOME MEASURES: Quality of life of asthmatic patients, attendance at accident and emergency departments, admissions to local hospitals, and steroid prescribing by general practitioners. RESULTS: Of 24 400 patients randomly selected and surveyed in 1993, 12 238 replied; 1621 were asthmatic of whom 1291 were sent a repeat questionnaire in 1996 and 780 replied. Of 24 400 patients newly surveyed in 1996, 10 783 (1616 asthmatic) replied. No evidence was found for an improvement in asthma related quality of life among newly surveyed patients in intervention practices compared with control practices. Neither was there evidence of an improvement in other measures of the quality of asthma care. Weak evidence was found for an improvement in quality of life in intervention practices among asthmatics registered with study practices in 1993 and followed up in 1996. Neither attendances at accident and emergency departments nor admissions for asthma showed any tendency to diverge in intervention and control practices over the study period. Steroid prescribing rates rose steadily during the study period. The average annual increase in steroid prescribing was 3% per year higher in intervention than control practices (95% confidence interval -1% to 6%, P=0.10). CONCLUSIONS: This model of service delivery is not effective in improving the outcome of asthma in the community. Further development is required if cost effective management of asthma is to be introduced. (+info)