The prevalence of long-term catheterization in the adult population is of the order of 0.03–0.07%... more The prevalence of long-term catheterization in the adult population is of the order of 0.03–0.07%, rising to 0.5% in those over 75 years and 2% in those over 85 years old. Studies have shown that the prevalence of urinary incontinence increases with age and is higher in females. Little is known about the costs of long-term catheterization, which have consequences for care decisions. A pilot study was conducted to test (a) the applicability in the UK of a methodology developed in the USA for measuring the cost of long-term catheterization in community based patients, and (b) the feasibility of using it in larger-scale community-based studies. The study made use of the method developed in the USA by Wagner and Hu (1998) to assess the true costs in the population. Patients were selected in order to represent as broad as possible a range of underlying disease processes and social circumstances. Eight patients were selected, drawn from 3 distinct groups of patients. The pilot study demon...
Designed by a group of ME/CFS researchers and health professionals, the European Network on Myalg... more Designed by a group of ME/CFS researchers and health professionals, the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) has received funding from the European Cooperation in Science and Technology (COST) (https://www.cost.eu/cost-actions/what-are-costactions/ ) COST action 15111 from 2016 to 2020. The main goal of the Cost Action was to assess the existing fragmented knowledge and experience on health care delivery for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in European countries, and to enhance coordinated research and health care provision in this field. We report on the recommendations for clinical diagnosis, heath services and care for people with ME/CFS in Europe, as prepared by the group of clinicians and researchers from 22 countries and 55 European health professionals and researchers, who have been informed by people with ME/CFS (https://www.cost.eu/actions/CA15111/#tabs|Name:overview).
Guiding legislation and associated bureaucracy for the ethical review of clinical trials observat... more Guiding legislation and associated bureaucracy for the ethical review of clinical trials observational studies and food related research play an important role in the competitiveness of a nation in the face of tough global competition to attract sponsors and investigators. This is of particular relevance in the case of multicentre trials and multidisciplinary research. Accordingly, in this report we tried to gather in-depth knowledge of the current role and practices of ethics committees nationwide in both clinical and research settings. This mini-review aims to describe the formulation and organization of ethical committees in Italy in order to provide a focus for deliberations on ethical issues in medical and scientific research in line with human rights, as set out in the European Union charter. Furthermore, we evaluated the impact of an institution’s ethical committee intervention on reducing the time required to obtain an opinion from Research Ethics Committees by guiding inves...
BACKGROUND: Case History Research on ME (CHROME) was established in 1994 to undertake research on... more BACKGROUND: Case History Research on ME (CHROME) was established in 1994 to undertake research on severely affected patients. Since 1995 CHROME has collected data on volunteers with severe ME/CFS. All are medically diagnosed, conform to Fukuda criteria, are or were house-bound, and ill for at least two years. Participants complete initial and annual follow-up questionnaires, and report their condition at onset of illness, a year previously, on recruitment, and annually thereafter. METHOD: We report symptom severity and ability to undertake activities of daily living in 324 participants recruited between 1995 and 1998, their evolution through time, and, for later onset (age 17+) subjects, changes occurring between recruitment and the latest questionnaire. Significance was assessed using the McNemar test or its binomial equivalent. RESULTS: For most features, subjects deteriorated between onset and recruitment, with subsequent improvement, often slow and uneven, among later onset case...
There is no consistent or standardized practice for the collection of treatment data in UK cancer... more There is no consistent or standardized practice for the collection of treatment data in UK cancer registries. This limits the usefulness and effectiveness of undertaking multiregional or national studies of treatment outcomes and survival. A working group was established to examine the practices for recording the type and the amount of treatment data held in the cancer records at different registries. A common set of anonymized case notes for breast and colorectal cancer patients, drawn from each registry, was employed to eliminate any selection bias. Each registry coded these case notes according to their own criteria, and the comparability of such data between registries was determined from their returns. Of the 11 registries in England, seven participated in the full study, with a total of 84 records being submitted by five registries. A flow diagram was constructed to show how specific data items in the cancer record structure could be linked between registries. Errors or inconsistencies in recording treatment details were identified, and the constraints in data comparability were defined from the case note returns. Variations in coding practice between registries were such as to vitiate interregional or national comparisons of current data. The working group recommended an extended minimum dataset, which included a date for the start of each treatment modality, that most registries should be able to implement with some system changes.
Much attention has been focused on the apparent risk to long-haul air travelers of venous thrombo... more Much attention has been focused on the apparent risk to long-haul air travelers of venous thromboembolism [deep vein thrombosis (DVT) and pulmonary embolism (PE)], following a number of well-publicized cases. However, there is little epidemiological data to elucidate the problem. PE tends to be under-diagnosed as a cause of death in the general population. This study sets out to establish the level of risk of fatal PE among long-haul passengers arriving in the UK, on the basis of a reappraisal of the role of PE in mortality in the general population. Autopsies carried out at Gloucester in 1996-2000 were reviewed to determine age-specific mortality rates for PE for West Gloucestershire. These rates were applied to long-haul air travelers arriving in the UK, for whom the number of passenger-years at risk were calculated, to estimate the expected numbers of deaths in this group. In 3764 autopsies, PE was the primary cause of death in 221 cases (5.9%), while in 304 (8.1%) it was present...
Studies in health technology and informatics, 1994
The particular logistical problems of collecting cancer registration data in the South-Western re... more The particular logistical problems of collecting cancer registration data in the South-Western region of England are discussed. The Regional Cancer Registry has endeavoured to overcome these through developing electronic links to hospital-based patient-information systems. Some of these involve data transfer on magnetic media, but there are also interrogation facilities which operate on a realtime, interactive basis, and complement these other facilities. A PC-based program (SNODEV5), which can accept data from histopathology computer systems, translate SNOMED codes to ICD-9, and produce files suitable for processing by the registry's Batch Data Entry system is described. Its contribution to the achievement and monitoring of equity in health care provision is discussed.
The prevalence of long-term catheterization in the adult population is of the order of 0.03–0.07%... more The prevalence of long-term catheterization in the adult population is of the order of 0.03–0.07%, rising to 0.5% in those over 75 years and 2% in those over 85 years old. Studies have shown that the prevalence of urinary incontinence increases with age and is higher in females. Little is known about the costs of long-term catheterization, which have consequences for care decisions. A pilot study was conducted to test (a) the applicability in the UK of a methodology developed in the USA for measuring the cost of long-term catheterization in community based patients, and (b) the feasibility of using it in larger-scale community-based studies. The study made use of the method developed in the USA by Wagner and Hu (1998) to assess the true costs in the population. Patients were selected in order to represent as broad as possible a range of underlying disease processes and social circumstances. Eight patients were selected, drawn from 3 distinct groups of patients. The pilot study demon...
Designed by a group of ME/CFS researchers and health professionals, the European Network on Myalg... more Designed by a group of ME/CFS researchers and health professionals, the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) has received funding from the European Cooperation in Science and Technology (COST) (https://www.cost.eu/cost-actions/what-are-costactions/ ) COST action 15111 from 2016 to 2020. The main goal of the Cost Action was to assess the existing fragmented knowledge and experience on health care delivery for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in European countries, and to enhance coordinated research and health care provision in this field. We report on the recommendations for clinical diagnosis, heath services and care for people with ME/CFS in Europe, as prepared by the group of clinicians and researchers from 22 countries and 55 European health professionals and researchers, who have been informed by people with ME/CFS (https://www.cost.eu/actions/CA15111/#tabs|Name:overview).
Guiding legislation and associated bureaucracy for the ethical review of clinical trials observat... more Guiding legislation and associated bureaucracy for the ethical review of clinical trials observational studies and food related research play an important role in the competitiveness of a nation in the face of tough global competition to attract sponsors and investigators. This is of particular relevance in the case of multicentre trials and multidisciplinary research. Accordingly, in this report we tried to gather in-depth knowledge of the current role and practices of ethics committees nationwide in both clinical and research settings. This mini-review aims to describe the formulation and organization of ethical committees in Italy in order to provide a focus for deliberations on ethical issues in medical and scientific research in line with human rights, as set out in the European Union charter. Furthermore, we evaluated the impact of an institution’s ethical committee intervention on reducing the time required to obtain an opinion from Research Ethics Committees by guiding inves...
BACKGROUND: Case History Research on ME (CHROME) was established in 1994 to undertake research on... more BACKGROUND: Case History Research on ME (CHROME) was established in 1994 to undertake research on severely affected patients. Since 1995 CHROME has collected data on volunteers with severe ME/CFS. All are medically diagnosed, conform to Fukuda criteria, are or were house-bound, and ill for at least two years. Participants complete initial and annual follow-up questionnaires, and report their condition at onset of illness, a year previously, on recruitment, and annually thereafter. METHOD: We report symptom severity and ability to undertake activities of daily living in 324 participants recruited between 1995 and 1998, their evolution through time, and, for later onset (age 17+) subjects, changes occurring between recruitment and the latest questionnaire. Significance was assessed using the McNemar test or its binomial equivalent. RESULTS: For most features, subjects deteriorated between onset and recruitment, with subsequent improvement, often slow and uneven, among later onset case...
There is no consistent or standardized practice for the collection of treatment data in UK cancer... more There is no consistent or standardized practice for the collection of treatment data in UK cancer registries. This limits the usefulness and effectiveness of undertaking multiregional or national studies of treatment outcomes and survival. A working group was established to examine the practices for recording the type and the amount of treatment data held in the cancer records at different registries. A common set of anonymized case notes for breast and colorectal cancer patients, drawn from each registry, was employed to eliminate any selection bias. Each registry coded these case notes according to their own criteria, and the comparability of such data between registries was determined from their returns. Of the 11 registries in England, seven participated in the full study, with a total of 84 records being submitted by five registries. A flow diagram was constructed to show how specific data items in the cancer record structure could be linked between registries. Errors or inconsistencies in recording treatment details were identified, and the constraints in data comparability were defined from the case note returns. Variations in coding practice between registries were such as to vitiate interregional or national comparisons of current data. The working group recommended an extended minimum dataset, which included a date for the start of each treatment modality, that most registries should be able to implement with some system changes.
Much attention has been focused on the apparent risk to long-haul air travelers of venous thrombo... more Much attention has been focused on the apparent risk to long-haul air travelers of venous thromboembolism [deep vein thrombosis (DVT) and pulmonary embolism (PE)], following a number of well-publicized cases. However, there is little epidemiological data to elucidate the problem. PE tends to be under-diagnosed as a cause of death in the general population. This study sets out to establish the level of risk of fatal PE among long-haul passengers arriving in the UK, on the basis of a reappraisal of the role of PE in mortality in the general population. Autopsies carried out at Gloucester in 1996-2000 were reviewed to determine age-specific mortality rates for PE for West Gloucestershire. These rates were applied to long-haul air travelers arriving in the UK, for whom the number of passenger-years at risk were calculated, to estimate the expected numbers of deaths in this group. In 3764 autopsies, PE was the primary cause of death in 221 cases (5.9%), while in 304 (8.1%) it was present...
Studies in health technology and informatics, 1994
The particular logistical problems of collecting cancer registration data in the South-Western re... more The particular logistical problems of collecting cancer registration data in the South-Western region of England are discussed. The Regional Cancer Registry has endeavoured to overcome these through developing electronic links to hospital-based patient-information systems. Some of these involve data transfer on magnetic media, but there are also interrogation facilities which operate on a realtime, interactive basis, and complement these other facilities. A PC-based program (SNODEV5), which can accept data from histopathology computer systems, translate SNOMED codes to ICD-9, and produce files suitable for processing by the registry's Batch Data Entry system is described. Its contribution to the achievement and monitoring of equity in health care provision is discussed.
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Papers by Derek Pheby