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Biomedical subjects

A Jacoby

Publications and source records attributed to A Jacoby.

At least 19 recordsLinked to original sources
PubMed2005

Development, validation, and evaluation of the PBC-40, a disease specific health related quality of life measure for primary biliary cirrhosis.

BACKGROUND AND AIMS: Study of health related quality of life (HRQOL) and the factors responsible for its impairment in primary biliary cirrhosis (PBC) has, to date, been limited. There is increasing need for a HRQOL questionnaire which is specific to PBC. The aim of this study was to develop, validate, and evaluate a patient based PBC specific HRQOL measure. SUBJECTS AND METHODS: A pool of potential questions was derived from thematic analysis of indepth interviews carried out with 30 PBC patients selected to represent demographically the PBC patient population as a whole. This pool was systematically reduced, pretested, and cross validated with other HRQOL measures in national surveys involving a total of 900 PBC patients, to produce a quality of life profile measure, the PBC-40, consisting of 40 questions distributed across six domains. The PBC-40 was then evaluated in a blinded comparison with other HRQOL measures in a further cohort of 40 PBC patients. RESULTS: The six domains of PBC-40 relate to fatigue, emotional, social, and cognitive function, general symptoms, and itch. The highest mean domain score was seen for fatigue and the lowest for itch. The measure has been fully validated for use in PBC and shown to be scientifically sound. PBC patient satisfaction, measured in terms of the extent to which a questionnaire addresses the problems that they experience, was significantly higher for the PBC-40 than for other HRQOL measures. CONCLUSION: The PBC-40 is a short easy to complete measure which is acceptable to PBC patients and has significantly greater relevance to their problems than other frequently used HRQOL measures. Its scientific soundness, shown in extensive testing, makes it a valuable instrument for future use in clinical and research settings.

Adult↗
PubMed2001

Mothers' coping in chronic childhood illness: the effect of presymptomatic diagnosis of vesicoureteric reflux.

UNLABELLED: AIMS OF THE STUDY WERE TO: Assess coping strategies of mothers who have a child with vesicoureteric reflex (VUR), determine mothers' understanding of VUR before and after diagnosis, assess mothers' perceived needs for support when coping with their child's VUR and compare the above aims between two groups of mothers of children with VUR. BACKGROUND: Vesicoureteric reflex (VUR) is a chronic, congenital, asymptomatic condition which when combined with urinary tract infection (UTI) can result in reflux nephropathy (RN), contributing to 20% of kidney transplants. Unfortunately, VUR is not usually diagnosed until after proven UTI, by which time RN has often developed. However, recent research, the familial ureteric reflux study (FURS) identified for the first time VUR in a cohort of new-borns investigated because of family history. Early detection and prompt treatment of UTI in the presence of VUR may significantly reduce the development of RN but this requires extreme vigilance by mothers, who are usually the primary carers. DESIGN: As mothers' experiences and perceptions were the focus, a qualitative design using semistructured, in-depth interviews was used. After obtaining ethical approval, mothers of 15 children with VUR diagnosed presymptomatically (i.e. after participation in the FUR study) and mothers of 14 children with VUR diagnosed post symptomatically were selected using a theoretical sampling matrix. All mothers gave informed consent and interviews were taped, transcribed and analysed using the 'Framework' technique. FINDINGS: Findings for both groups fall into three discrete phases: the prediagnostic, diagnostic and postdiagnostic. Analysis showed that mothers in the post symptomatic diagnosis group experienced most problems in coping, particularly because of difficulty in engaging medical intervention in the prediagnostic phase. Generally, mothers in the presymptomatic group coped well apart from those who themselves had VUR and/or RN who expressed guilt about their child inheriting the condition and consequently difficulty in coping. CONCLUSION: Early diagnosis of VUR improved mothers' coping. However, both groups identified a major need for improved information provision and support to assist coping with the sustained uncertainty of the condition.

Adaptation, Psychological↗
PubMed2001

Mothers' evolving relationships with doctors and nurses during the chronic childhood illness trajectory.

AIMS: In this paper the evolution of mothers' relationships with doctors and nurses during the chronic childhood illness trajectory is explored and discussed and the implications for child health care are considered. The discussion reports one aspect of a qualitative study that sought to determine whether time of diagnosis influenced mothers' coping across the illness trajectory. BACKGROUND: The quality of relationships between mothers, who are usually the primary carers, and nursing and medical staff is central to the experience of coping with chronic childhood illness. Mothers need to develop expertise in a wide range of technical skills and knowledge of complex health care issues, while also coming to terms with the uncertainty of a condition with an unpredictable trajectory. Attempts to understand the significance of relationships between those living with chronic illness and staff have highlighted a number of factors that may influence the degree to which they are viewed as satisfactory. The way staff communicate with families has been identified as one of the mediating processes through which the quality of such is determined. DESIGN: Mothers of 15 children diagnosed presymptomatically and 14 children diagnosed postsymptomatically with the chronic illness Vesicoureteric Reflux (VUR) were interviewed to assess and compare coping strategies across the trajectory. Mothers' written consent was obtained and interviews were tape-recorded, transcribed and analysed using the 'Framework Technique'. FINDINGS AND CONCLUSION: The need to develop and sustain trusting relationships with staff was reported as a continual source of stress for mothers. The formation of satisfactory alliances, based on mutual respect and good communication early in the trajectory, in particular during the prediagnostic phase, was found to be instrumental in coping and competence development during the later chronic phase of the trajectory. Further research is needed to map prospectively the evolution of relationships between mothers and staff across the trajectory.

Adaptation, Psychological↗
PubMed2001

Are serum anticonvulsant levels in people with epilepsy appropriately monitored?

The medical care of people with epilepsy has often been described as being poor, although objective markers for the quality of epilepsy care are lacking. This paper describes the results of using a simple quality marker, appropriate measuring of serum anticonvulsant levels, in assessing the quality of epilepsy care. The checking of serum phenytoin levels in certain clinical circumstances is advocated, whereas the checking of serum sodium valproate levels is not generally supported. A total of 1254 people with epilepsy in the community had their medical records examined for evidence of checking of anticonvulsant levels and 1204 of these individuals completed questionnaires about their epilepsy and its treatment. Of those on phenytoin, only 26% to 47% had phenytoin levels checked appropriately; 23% of patients on sodium valproate were inappropriately having their serum levels checked. The only clinical or organizational factor that predicted whether checking of serum phenytoin levels was performed was whether or not patients reported three common phenytoin side-effects but this still showed a small effect size (odds ratio 2.4).

Anticonvulsants↗
PubMed2001

The quality of life of older people with epilepsy: findings from a UK community study.

The impact of epilepsy on the quality of life of older people with epilepsy has rarely been investigated. As part of a large prevalence study of epilepsy conducted in one UK Health Region, we investigated the burden of their condition in older compared with younger people. A second analysis compared quality of life in those men and women diagnosed after the age of retirement from the workforce compared with those diagnosed before that age. Data were collected from men and women with epilepsy and from their primary and secondary care physicians. There were few differences between older and younger people with regard to their reported quality of life, though younger people were more likely to report feeling stigmatized by their condition. Older people with epilepsy diagnosed in later life were more anxious and depressed than those diagnosed earlier and their overall perception of quality of life was more likely to be negative. Our data emphasize that older people do not necessarily experience poorer quality of life than younger people, but those first diagnosed in later life do appear to have a quality of life which is more impaired. Consideration should be paid to the important psychosocial consequences of epilepsy in the older person.

Age Factors↗
PubMed2001

Additional educational needs in children born to mothers with epilepsy.

OBJECTIVES: To examine the relative risks of additional educational needs (AENs) in children exposed to antiepileptic drug (AED) monotherapy and polytherapy regimes in utero. METHODS: A retrospective survey of women between the ages of 16 to 40 registered at the Mersey Regional Epilepsy Clinic, who received a postal questionnaire concerning their experience of pregnancy and the subsequent schooling of live-born children. RESULTS: 721 (57%) women of the 1267 approached returned an adequately completed questionnaire; 330 (46%) had given birth to at least one live-born child. Information was collected on 594 children, 400 of whom were of school age (4-18). 150 (37.5%) had been exposed to monotherapy in utero, 74 (18.5%) were exposed to polytherapy, and 176 were not exposed to any AEDs. The odds ratio of AENs for all children exposed to AEDs in utero compared with those unexposed was 1.49 (95% confidence interval (95% CI) 0.83 -2.67). Odds ratios for AENs for each therapy subgroup compared with those unexposed were also calculated for all children. Those exposed to valproate monotherapy had an odds ratio of 3.4 (95% CI 1.63-7.10) by contrast with an odds ratio of 0.26 (95% CI 0.06- 1.15) for carbamazepine. Polytherapy including valproate had similarly high odds ratios for AENs compared with those unexposed of 2.51 ( 95% CI 1.04-6.07) versus the odds ratio of 1.51 ( 95% CI 0.56-4.07) for polytherapy excluding valproate. CONCLUSIONS: Although the findings should be treated with caution, they suggest that monotherapy or polytherapy with valproate during pregnancy carries particular risks for the development of children exposed in utero.

Adolescent↗
PubMed2000

TAMBIS: transparent access to multiple bioinformatics information sources.

UNLABELLED: TAMBIS (Transparent Access to Multiple Bioinformatics Information Sources) is an application that allows biologists to ask rich and complex questions over a range of bioinformatics resources. It is based on a model of the knowledge of the concepts and their relationships in molecular biology and bioinformatics. AVAILABILITY: TAMBIS is available as an applet from http://img.cs.man.ac.uk/tambis SUPPLEMENTARY: A full manual, tutorial and videos can be found at http://img.cs.man.ac.uk/tambis. CONTACT: tambis@cs.man.ac.uk

Computational Biology↗
PubMed2000

Patient-based assessments of quality of life in newly diagnosed epilepsy patients: validation of the NEWQOL.

PURPOSE: In epilepsy, patient-based assessments are increasingly used as outcome measures in clinical trials of novel therapies alongside the traditional clinical measures of efficacy. The objective of this study was to validate psychometrically a quality of life (QOL) measure developed for use with recently diagnosed epilepsy patients. METHODS: The NEWQOL (Quality of Life in Newly Diagnosed Epilepsy Instrument) is a 93-item self-administered battery designed to assess QOL in patients with new-onset epilepsy. NEWQOL consists of eight multi-item scales (13 subscales) measuring several health parameters: Anxiety, Depression, Social Activities, Symptoms, Locus of Control/ Mastery, Neuropsychological Problems (includes the following subscales: Fatigue, Memory, Concentration, Motor Skills, and Reading), Social Stigma, Worry, Work Limitations, and several single-item measures (General Health, Number of Seizures, Social Limitations, Social Support, Self Concept, Ambition Limitations, Health Transition, and General Limitations). The NEWQOL was collected at baseline and 1 week post-baseline from 108 patients in the U.K. and U.S. RESULTS: All of the multi-item scales had high item discriminant validity, good test-retest reliability, and acceptable levels of internal consistency reliability; all but the Reading and Stigma subscales had negligible floor and ceiling effects. General linear models were used to examine the known groups validity of NEWQOL. Significant differences were observed in the Worry, Symptoms, Summary Neuropsychological Scales, and all Neuropsychological subscales (Memory, Fatigue, Concentration, Motor Skills, and Reading), indicating poorer functioning in the more frequent or severe seizure groups. CONCLUSIONS: Results from this study offer supportive evidence that NEWQOL has good validity and reliability and can discriminate between patient groups, particularly in relation to symptoms and psychological problems. We conclude that NEWQOL represents a useful measure for future studies in this patient population.

Adolescent↗
PubMed2000

The stigma of epilepsy: a European perspective.

PURPOSE: To study the stigma of epilepsy in a European sample. METHODS: Clinical and demographic details and information about patient-perceived stigma was collected by using self-completed questionnaires mailed to members of epilepsy support groups. RESULTS: Stigma data were collected from >5,000 patients living in 15 countries in Europe. Fifty-one percent reported feeling stigmatised, with 18% reporting feeling highly stigmatised. High scores were correlated with worry, negative feelings about life, long-term health problems, injuries, and reported side effects of antiepileptic drugs (AEDs). Cross-cultural comparisons revealed significant differences between countries. A multivariate analysis identified impact of epilepsy, age of onset, country of origin, feelings about life, and injuries associated with epilepsy as significant contributors on scores on the stigma scale. CONCLUSIONS: This study confirms the findings of previous studies that have identified the importance of both clinical and nonclinical factors in understanding the stigma of epilepsy. The results of cross-cultural differences require further explanation, and much more research should be conducted to reduce the stigma associated with epilepsy.

Adolescent↗
PubMed2000

Treatment of multiple sclerosis with interferon beta: an appraisal of cost-effectiveness and quality of life.

OBJECTIVE: To evaluate the cost-effectiveness of interferon beta-1b (IFbeta-1b) for relapsing-remitting multiple sclerosis (RRMS). METHODS: Construction of a cost-effectiveness model using published data on IFbeta-1b effectiveness and the natural history of RRMS, and new data on costs and quality of life (QoL) from a sample of 102 patients with RRMS and resident in northern England. RESULTS: Poorer QoL was found for patients with multiple sclerosis compared with the general population; those who had had a relapse; those with worse states identified by a clinical measure (expanded disability status scale (EDSS)). Relapses have effects over several months. Health state valuations were higher than in the general population. Costs were higher in relapse than remission and for worse EDSS states. IFbeta-1b costs were larger than cost savings. The best cost-effectiveness estimate was pound28 700 per relapse avoided, which is pound809 900 per QALY gained; or pound328 300 per QALY gained allowing for effects of progression over 5 years. Estimates were robust to changes in assumptions. CONCLUSIONS: The impact of multiple sclerosis on QoL is substantial. Future trials should base outcomes measurement on QoL and be better linked to natural history and cost data. IFbeta-1b produces important occasional short term QoL gains, but small gains in QALYs overall and large additional costs.

Adjuvants, Immunologic↗
PubMed2000

Evaluation of measures used to assess quality of life after stroke.

BACKGROUND AND PURPOSE: Assessment of quality of life (QOL) after stroke is becoming common with the recognition that evaluation of treatment should include quality as well as quantity of survival. This article will outline the main conceptual and methodological issues in QOL assessment, highlight advantages and disadvantages of measures used in stroke QOL research, and discuss some unresolved issues. SUMMARY OF REVIEW: We undertook a MEDLINE search using the keywords "stroke" and "quality of life" and reviewed 3 key texts on QOL measurement in stroke. Fifteen generic and 10 condition-specific measures used to assess QOL in stroke were identified and evaluated with the following criteria: reliability, validity, responsiveness, precision, acceptability, suitability for proxy respondents, mode of administration, and use of patient-centered approaches in development. Domains covered and level of comprehensiveness varied widely between generic and stroke-specific measures. No stroke-specific instruments used patient-centered approaches in their development. Four stroke-specific measures (Frenchay Activities Index, Niemi QOL scale, Ferrans and Powers QOL Index-Stroke Version, and Stroke-Adapted Sickness Impact Profile [SA-SIP30]) provided evidence of reliability and validity. CONCLUSIONS: The need remains for a patient-centered, psychometrically robust, stroke-specific QOL measure. Patients should be involved in each stage of instrument development. Caution is needed in the selection of an instrument to measure QOL after stroke. Although the Ferrans and Powers QOL Index-Stroke Version, Niemi QOL scale, SA-SIP30, and Sickness Impact Profile come closest to satisfying many of the criteria outlined in this article, the selection of any individual instrument depends on the specific goals and constraints of a particular study.

Evaluation Studies as Topic↗
PubMed1999

The SF-36 as a health status measure for epilepsy: a psychometric assessment.

A considerable literature is now available on the applications and psychometric properties of the MOS SF-36 Health Survey. In epilepsy, the SF-36 has been used as a health status measure in its own right and as the stem for two condition-specific measures. This paper replicates for epilepsy previous work to support use of the SF-36 across a range of clinical conditions. Data were obtained from a European-wide descriptive study of quality of life of adults with epilepsy; analysis of responses on the SF-36 is based on 4,929 subjects in eight countries. Missing value rates for all SF-36 items were low; percentages for whom complete information available for subscales ranged from 95.7% to 98.6%. All subscales passed tests for item-internal consistency and item-discriminant validity. Reliability coefficients exceeded the standard recommended for group comparisons across all subscales. Floor effects were negligible for all but the two role disability subscales; there were substantial ceiling effects for five of the SF-36 subscales. We conclude that the SF-36 is a valid and reliable health status measure for descriptive studies of people with epilepsy, but ceiling effects may limit its usefulness as an outcome measure in the assessment of new treatments.

Adolescent↗
PubMed1999

Cross-cultural differences in health-related quality of life of people with epilepsy: findings from a European study.

PURPOSE: To examine between-country differences in health-related quality of life (HRQOL) of adults with epilepsy across a large number of European countries. METHODS: Self-completion postal questionnaire sent to large sample of adults with epilepsy, recruited from epilepsy support groups or epilepsy outpatient clinics. The questionnaire was developed in English and translated. Back-translations from each language were checked for accuracy. The questionnaire sought information on clinical and socio-demographic details, and contained a number of previously validated scales of psychosocial well-being (the SF-36, the perceived impact of epilepsy scale, and a feelings of stigma scale). RESULTS: Controlling for socio-demographic and clinical characteristics, significant between-country differences were found in scores on the perceived impact of epilepsy scale, on seven of the eight SF-36 domains, and on the feelings of stigma scale. Respondents in Spain and the Netherlands fared consistently better, whilst those in France fared poorest, compared to those in other countries in terms of the various HRQOL measures used. CONCLUSION: Several possible reasons for the cross-cultural differences in HRQOL are proposed. Clearly, there is no single explanation and there may also be reasons which we have overlooked. This study emphasises the need for further comprehensive research in order that the position of people with epilepsy in different countries be more thoroughly understood in the social context.

Adolescent↗
PubMed1999

Patients' understanding of and adjustment to epilepsy: interim findings from a European survey.

The purpose of the study was to discover how much European patients with epilepsy and their carers understand about epilepsy. This article reports the interim results for the first four European countries recruited to the study and includes data collected from 1,920 people with epilepsy and 2,136 carers. Clinical and demographic details and data on understanding of epilepsy were collected using self-completed questionnaires mailed to members of epilepsy support groups. There were no significant differences between people with epilepsy and carers for scores on the Epilepsy Knowledge Questionnaire, although people with epilepsy were more likely to score in the higher ranges. Higher scorers on the questionnaire were more likely to be better educated, to have lower scores on the impact of epilepsy scales, to have higher scores on the adjustment to epilepsy scale, and were less likely to report feeling stigmatized. The study confirms the findings of previous studies that people with epilepsy are reasonably well informed, although some gaps in their knowledge were evident. A comparison of country differences will be made and multivariate statistical analysis will allow a better understanding of the contribution of knowledge to people's overall adjustment to their condition.

Adaptation, Psychological↗
PubMed1999

Lay carers' satisfaction with community palliative care: results of a postal survey. South Tyneside MAAG Palliative Care Study Group.

This paper reports the substantive findings of a study that examined the feasibility of using postal questionnaires to assess the satisfaction of lay caregivers with the care received in the community by those dying of cancer. The focus of the analysis was the quality of information provided by health professionals, health services used in the final year of the dying person's life and the lay carer's views about the quality of these services. The study was a retrospective survey of lay carers identified from death certificates over a 9-month period. Of the 355 people contacted, 156 completed the questionnaires, a 44% response rate. The results of the survey indicate that information provision was deemed unsatisfactory by a large proportion of respondents, and that dissatisfaction with care received from hospital, the district nursing service and the general practitioner was common. Levels of satisfaction with care were clearly related to a range of service factors. Our survey also highlighted clear differences in the perceived quality of specialist and generic services for those dying of cancer. A comparison of the findings from this postal study with those reported in earlier retrospective interview surveys of lay carers suggests that the use of the postal questionnaire is a valid and cost-effective approach for assessing quality of care. The data provide baseline information against which improvements in the quality of care can be measured.

Caregivers↗
PubMed1999

Feasibility of using postal questionnaires to examine carer satisfaction with palliative care: a methodological assessment. South Tyneside MAAG Palliative Care Study Group.

This paper reports on the methodological findings from a project which examined the feasibility of using a postal questionnaire to assess lay carer satisfaction with palliative care. The focus of this paper is the process of questionnaire development and its psychometric evaluation. The questionnaire was derived from an interview schedule used in previous national surveys of care for the dying, and was refined through qualitative work with recently bereaved lay carers. It was then tested in a postal survey of 355 lay carers identified from death registration certificates. Overall response rates were low, but significantly enhanced by the use of a single reminder sent 3 weeks after the initial mailshot. The analysis indicated that in the majority of cases the person targeted to receive the questionnaire was the most appropriate informant. Psychometric evaluation of the questionnaire against five criteria was encouraging, with low item nonresponse and ineligible response, and some evidence of discriminatory power, reliability, and face and content validity. Postal approaches appear to represent an acceptable means of assessing user satisfaction with palliative care, compared with more resource-intensive methods.

Caregivers↗
PubMed1998

Liverpool Seizure Severity Scale revisited.

The purpose of the study was to examine the psychometric properties of the revised Liverpool Seizure Severity Scale. The scale has been adapted to increase its content validity and its potential for detecting change attributable to antiepileptic drug treatment. Ninety-seven patients completed the revised scale of which 32 completed it for both major and minor seizures. Reliability of the revised scale was conducted using assessment of internal consistency and test-retest. T-tests were conducted to assess the ability of patients to differentiate between major and minor seizures on scores of the seizure-severity scale. The psychometric properties of the scale were not adversely affected by either the increase in the number of items or the additional response scores. Patients completing the two scales of major and minor seizures were able to reliably differentiate between the two. We have attempted to improve the Liverpool Seizure Severity Scale in order to enhance its reliability, validity and sensitivity to change. The amendments we have made have not adversely affected its psychometric properties and we hope that it will make it more acceptable for use in clinical trials of new antiepileptic drug treatment. The revised scale is currently being applied to a number of clinical trials.

Adolescent↗