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Biomedical subjects

C Jenkinson

Publications and source records attributed to C Jenkinson.

At least 55 records · Page 3Linked to original sources
PubMed1999

Development and validation of a short measure of health status for individuals with amyotrophic lateral sclerosis/motor neurone disease: the ALSAQ-40.

In recent years there has been an increased appreciation of the importance of measuring health status from the patient's point of view, but until now no attempt has been made to develop an amyotrophic lateral sclerosis (ALS)-specific health status measure. The development of such an instrument is especially relevant now with the introduction of drugs that prolong life in ALS but limited data is available on the impact such treatments have on quality of life. This paper reports on the development of an ALS-specific measure, the forty item ALS assessment questionnaire (ALSAQ-40). The development of the ALSAQ-40 followed three main stages. Stage 1 consisted of in-depth, semi-structured exploratory interviews conducted on a sample of 18 patients to identify areas of salience and concern to patients with ALS. These interviews generated 78 candidate questions. In stage 2, the 78-item questionnaire was used in a postal survey to identify appropriate rephrasing/shortening and to determine the acceptability of the measure. In addition, this exercise helped identify sub-scales of the instrument addressing different dimensions of ALS. Finally in stage 3 the data collected in stage 2 was analysed to areas measured by the instrument and to remove redundant questions. The resulting measure contains forty questions measuring five areas of health status: Eating and Drinking, Communication, ADL/independence, Physical mobility, Emotional Functioning. The measure has high face, internal and construct validity and is likely to prove a useful measure in the evaluation of treatment regimes for ALS/MND.

Activities of Daily Living↗
PubMed1999

Assessing health-related quality-of-life in individuals with haemophilia.

The objectives of this study were to analyse current levels of health-related quality-of-life (HR-QoL) in individuals with severe haemophilia and to assess the scope for these levels to improve. To do this, 249 individuals with severe, moderate and mild haemophilia were asked to complete Medical Outcomes Study (MOS) Short-Form 36 (SF-36) and EuroQol (EQ-5D) questionnaires. Access was also gained to two appropriate normative data sets. The results from these questionnaires showed that HIV status, history of orthopaedic surgery and bleeding frequency in the previous calendar year were not strong predictors of HR-QoL for individuals with severe haemophilia. However, for the majority of scales, age was found to be a strong predictor of HR-QoL for this patient group. The results from the analysis also showed that compared to individuals with moderate/mild haemophilia and the UK male normative population, individuals with severe haemophilia generally recorded poorer levels of HR-QoL. These results suggest, therefore, that individuals with severe haemophilia have reduced levels of HR-QoL compared to individuals with moderate/mild haemophilia and the general population, irrespective of differences in age. The results also suggest that the scope for primary prophylaxis to increase HR-QoL in individuals with severe haemophilia is significant.

Adult↗
PubMed1999

Evidence for the validity and reliability of the ALS assessment questionnaire: the ALSAQ-40.

OBJECTIVES: The purpose of the study was to assess the validity and reliability of a new disease specific measure of health-related quality of life for ALS/MND: the 40-item ALS Assessment Questionnaire (ALSAQ-40). DESIGN: We carried out a longitudinal postal survey. The two administrations of the questionnaire were separated by 3 months. SAMPLE: Subjects were patients diagnosed with ALS/MND and registered with the UK MND Association. RESULTS: Dimensions of the ALSAQ-40 were shown to have high levels of internal reliability. The ALSAQ-40 was found to be sensitive to changes in self reported overall health state. CONCLUSION: We concluded that the ALSAQ-40 has high levels of reliability and validity and can be used as an outcome measure in studies evaluating new treatment regimes and therapies.

Amyotrophic Lateral Sclerosis↗
PubMed1999

Short Form 36 (SF-36) Health Survey questionnaire: which normative data should be used? Comparisons between the norms provided by the Omnibus Survey in Britain, the Health Survey for England and the Oxford Healthy Life Survey.

BACKGROUND: Population norms for the attributes included in measurement scales are required to provide a standard with which scores from other study populations can be compared. This study aimed to obtain population norms for the Short Form 36 (SF-36) Health Survey Questionnaire, derived from a random sample of the population in Britain who were interviewed at home, and to make comparisons with other commonly used norms. METHODS: The method was a face-to-face interview survey of a random sample of 2056 adults living at home in Britain (response rate 78 per cent). Comparisons of the SF-36 scores derived from this sample were made with the Health Survey for England and the Oxford Healthy Life Survey. RESULTS: Controlling for age and sex, many of mean scores on the SF-36 dimensions differed between the three datasets. The British interview sample had better total means for Physical Functioning, Social Functioning, Mental Health, Energy/Vitality, and General Health Perceptions. The Health (interview) Survey for England had the lowest (worst) total mean scores for Physical Functioning, Social Functioning, Role Limitations (physical), Bodily Pain, and Health Perceptions. The postal sample in central England had the lowest (worst) total mean scores for Role Limitations (emotional), Mental Health and Energy/Vitality. CONCLUSION: Responses obtained from interview methods may suffer more from social desirability bias (resulting in inflated SF-36 scores) than postal surveys. Differences in SF-36 means between surveys are also likely to reflect question order and contextual effects of the questionnaires. This indicates the importance of providing mode-specific population norms for the various methods of questionnaire administration.

Adolescent↗
PubMed1999

Comparison of UK and US methods for weighting and scoring the SF-36 summary measures.

BACKGROUND: The SF-36 is a widely used measure of health status that can be scored to provide either a profile of eight scores or two summary measures of health, the Physical Component Summary and Mental Component Summary (PCS and MCS). Scoring of the summary scales is undertaken by weighting and summing the original eight dimensions. These weights are gained from factor analysis of data from a general population and have been assumed to be country specific. However, it has been suggested that the weights gained from the US developers could be applied to all datasets, throughout the world, for purposes of comparability and simplicity. The purpose of this study is to evaluate US and UK scoring schemes in a UK population dataset, and in a cohort study of elderly congestive heart failure patients receiving standard therapy and a trial of open vs laparoscopic surgery for hernia repair. METHODS: This paper compares algorithms developed in the USA and the UK for the calculation of the Physical and Mental Health Summary scores (PCS and MCS) for the SF-36 health status measure. In this study the PCS and MCS were calculated using a weighting scheme recommended by the developers and derived from a US population sample dataset, as well as being calculated from weights derived from an UK population sample dataset. RESULTS: The two methods produced similar results, both cross-sectionally and in the assessment of change. CONCLUSIONS: It is suggested that it may be necessary to weight the PCS and MCS using only the original US algorithms, which will lead to more uniform analysis of datasets and may also lead to greater uptake of the summary measures. Furthermore, the results would suggest that in international trials the SF-36 can be adopted and summary scores calculated for countries where no large-scale normative dataset is available. However, further research is needed to determine that the similarity of results gained using UK and US algorithms is not an idiosyncratic feature of the UK data. Studies to verify the findings reported here are required from other countries.

Aged↗
PubMed1999

Assessment of the SF-36 version 2 in the United Kingdom.

OBJECTIVES: To introduce the UK SF36 Version II (SF36-II), and to (a) gain population norms for the UK SF36-II in a large community sample as well as to explore the instrument's internal consistency reliability and construct validity, and (b) to derive the Physical Component Summary (PCS) and Mental Component Summary (MCS) algorithms for the UK SF36-II. DESIGN: Postal survey using a questionnaire booklet, containing the SF-36-II and questions on demographics and long term illness. SETTING: The sample was drawn from General Practitioner Records held by the Health Authorities for Berkshire, Buckinghamshire, Northamptonshire, and Oxfordshire. SAMPLE: The questionnaire was sent to 13,800 randomly selected subjects between the ages of 18-64 inclusive. OUTCOME MEASURES: Scores for the eight dimensions of the UK SF36-II and the PCS and MCS summary scores. RESULTS: The survey achieved a response rate of 64.4% (n = 8889). Internal consistency of the different dimensions of the questionnaire were found to be high. Normative data for the SF-36 are reported, broken down by age and sex, and social class. Factor analysis of the eight domains produced a two factor solution and provided weights for the UK SF36-II. CONCLUSION: The SF36-II domains were shown to have improved reliability over the previous version of the UK SF36. Furthermore, enhancements to wording and response categories reduces the extent of floor and ceiling effects in the role performance dimensions. These advances are likely to lead to better precision as well as greater responsiveness in longitudinal studies.

Adolescent↗
PubMed1999

Health-related quality-of-life measurement in patients with Parkinson's disease.

Outcome measures are increasingly used to assess the impact of diseases such as Parkinson's disease (PD) from the patient's perspective. These measures, in the form of questionnaires to assess health-related quality of life (HR-QOL), are of 2 main kinds: generic and disease-specific. The former is intended to be relevant to the widest range of health problems; the latter is developed specifically to assess HR-QOL for a specific condition. Possible consequences of PD have been assessed by generic instruments such as the Sickness Impact Profile (SIP), the Nottingham Health Profile (NHP), the Medical Outcomes Study 36-Item Short Form (SF-36) Health Survey and also by disease-specific instruments; in particular, the Parkinson's Disease Quality-of-Life Questionnaire (PDQL) and 39-Item Parkinson's Disease Questionnaire (PDQ-39). This article summarises the criteria whereby such instruments should be evaluated by potential users and describes in more detail the methods of developing and testing such disease-specific instruments for use in PD. There is a range of valid and feasible methods available for taking into account patients' views of PD outcomes. These will become important outcome measures in future clinical trials of treatment regimes.

Health Status Indicators↗
PubMed1998

Randomised controlled trial comparing hospital at home care with inpatient hospital care. I: three month follow up of health outcomes.

OBJECTIVES: To compare hospital at home care with inpatient hospital care in terms of patient outcomes. DESIGN: Randomised controlled trial with three month follow up. SETTING: District general hospital and catchment area of neighbouring community trust. SUBJECTS: Patients recovering from hip replacement (n=86), knee replacement (n=86), and hysterectomy (n=238); elderly medical patients (n=96); and patients with chronic obstructive airways disease (n=32). INTERVENTIONS: Hospital at home care or inpatient hospital care. MAIN OUTCOME MEASURES: Dartmouth COOP chart to measure patients' general health status; SF-36 to measure possible limitations in physical functioning of patients with hysterectomy; disease specific measures-chronic respiratory disease questionnaire, Barthel index for elderly medical patients, Oxford hip score, and Bristol knee score; hospital readmission and mortality data; carer strain index to measure burden on carers; patients' and carers' preferred form of care. RESULTS: At follow up, there were no major differences in outcome between hospital at home care and hospital care for any of the patient groups except that those recovering from hip replacement reported a significantly greater improvement in quality of life with hospital at home care (difference in change from baseline value 0.50, 95% confidence interval 0.13 to 0.88). Hospital at home did not seem suitable for patients recovering from a knee replacement, as 14 (30%) of patients allocated to hospital at home remained in hospital. Patients in all groups preferred hospital at home care except those with chronic obstructive airways disease. No differences were detected for carer burden. Carers of patients recovering from knee replacement preferred hospital at home care, while carers of patients recovering from a hysterectomy preferred hospital care. CONCLUSIONS: Few differences in outcome were detected. Thus, the cost of hospital at home compared with hospital care becomes a primary concern.

Adult↗
PubMed1998

PDQ-39: a review of the development, validation and application of a Parkinson's disease quality of life questionnaire and its associated measures.

Parkinson's disease is a common degenerative neurological condition. A number of general instruments exist to measure quality of life, but these were not designed to address areas salient to a specific disease. This contribution reviews the development and validation of the PDQ-39, a short 39-item quality of life questionnaire for Parkinson's disease. PDQ-39 data can be presented either in profile form or as a single index. This report also reviews the development and validation of a briefer measure (PDQ-8) derived from the PDQ-39, and of two summary indices (PDQ-39SI and PDQ-8SI.

Adult↗
PubMed1998

The European Amyotrophic Lateral Sclerosis Health Profile Study. ALS-HPS Steering Group.

Quality of life is increasingly regarded as an important outcome measure in the evaluation of treatment regimes. The last decade has seen an enormous growth in the application of measures designed to assess quality of life in a vast array of medical specialities. However, the use of such measures in neurology has been limited and is virtually non-existent in amyotrophic lateral sclerosis (ALS). The European ALS Health Profile Study is a longitudinal survey of patients diagnosed with ALS or motor neurone disease in which patients are asked to complete questionnaires concerning their subjective health status. Data from clinical assessments is also collected. It is intended that the information collected will provide more systematic and detailed evidence of the impact of the disease from the perspective of the patient. This paper outlines the purpose and methodology of the project.

Amyotrophic Lateral Sclerosis↗
PubMed1998

Comparison of medical and nursing attitudes to resuscitation and patient autonomy between a British and an American teaching hospital.

In the last 30 years, cardiopulmonary resuscitation (CPR) has evolved from an intervention indicated only in cases of acute insult to an otherwise healthy body to a default measure employed in virtually all cases of cardiac failure. The high cost and low efficacy rate of CPR has provoked questions about the moral and economic wisdom of its routine use, particularly for elderly patients with serious comorbidity. This paper presents the results of a comparative study of decision making practices concerning "Do-Not-Resuscitate" (DNR) orders in British and American hospitals. Thirty-four physicians and nurses in one American and one British hospital were interviewed about their decision making practices. Qualitative methods of data analysis were employed. The study revealed that while the American and British hospitals had adopted similar formal protocols for DNR decision making, in practice the British physicians often made DNR decisions unilaterally, whereas the American physicians sought the patient's or surrogate's consent in every instance, even where it was not legally required. The British decision making model enables physicians to reduce the inappropriate use of resuscitation, but at the expense of patient autonomy. In contrast, the American approach fully respects patient autonomy, but except in cases of medical futility grants physicians no authority to refuse to render treatments that are in their judgment contraindicated.

Attitude of Health Personnel↗
PubMed1998

How should we evaluate health status? A comparison of three methods in patients presenting with obstructive sleep apnoea.

The purpose of this paper is to compare three approaches to the measurement of patient-reported health status which produce summary scales of health status: the Patient-generated Index (PGI) is a measure of individual quality of life (QoL), the EuroQol is a measure of QoL the results of which are weighted by utility values gained from community surveys and the SF-36 which produces two summary scales of health status (the physical component summary (PCS) and the mental component summary (MCS) scores). A follow-up interview survey of patients with obstructive sleep apnoea (OSA) was conducted. The patients received continuous positive airways pressure therapy (CPAP) between the two administrations of the questionnaires. One hundred patients presenting with OSA and who were suitable for CPAP therapy were asked if they would take part in the study. The results on the PGI, EuroQol EQ-5D utility weighted scores and 'thermometer' scores and SF-36 physical and mental summary scores were measured. Eighty-nine respondents provided sufficient data to calculate PGI and EuroQol scores and 86 patients provided sufficient data to calculate SF-36 summary scores. The PGI indicated substantial improvement after CPAP treatment whereas the EuroQol indicated little or no improvement on either utility weighted or thermometer scores. The SF-36 PCS and MCS scores were lower than those of the general population at baseline, but had improved to the normative levels after treatment. The EuroQol provided a substantially different picture of change to either of the ones gained from the SF-36 or PGI. It is suggested that the EuroQol does not contain questions which relate to important aspects of health and well-being and may not accurately reflect the health state of individuals. Consequently, caution must be exercised to assure that an appropriate instrument has been employed when using health outcomes data to assess or prioritize available health care treatments.

Adult↗
PubMed1998

Use of the Short Form-36 to detect the influence of upper gastrointestinal disease on self-reported health status.

Patient-centred outcome measures such as the Short Form-36 (SF-36) have been developed to assess the impact of ill health and medical interventions on self-reported health status. The objective of the study was to assess the impact of gastrointestinal disease upon health status as measured by the SF-36 physical and mental health component scores (PCS and MCS) and to assess whether these component scores might be an appropriate outcome measure for use in clinical research in gastroenterology. The subjects were 364 patients aged between 18 and 64 years who had been prescribed proton pump inhibitors (PPIs) by general practitioners in Oxfordshire. The general practices participating identified patients who had been prescribed PPIs. The data were abstracted from the general practice medical records of these patients concerning gastrointestinal diagnoses and other prescribed medications. The patients were sent the SF-36 questionnaire by post and the PCS and MCS scores were derived, which were adjusted for age and sex and compared with the scores of the general population of the Oxford region. Co-morbidity was assessed by the extent to which non-gastric medications were also used. The commonest diagnoses were oesophagitis/gastro-oesophageal reflux and indigestion. People with these diagnoses had significantly lower health status than the general population. Differences persisted when the results were controlled for the possible effects of co-morbidity. It was concluded that the SF-36 is sensitive to the impact of gastrointestinal disease on health status.

Adolescent↗