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Thrombotic thrombocytopenic purpura (TTP) is an acute, rare, life-threatening disorder. This report presents the South East (SE) England registry for TTP, from April 2002 to December 2006, which included 176 patients and 236 acute episodes; 75% of patients were female and 25% were male, overall median age at presentation was 42 years. Mortality was 8·5%, most cases died before treatment was instigated. The main ethnic groups were Caucasian (64%) and Afro Caribbean (27%). Seventy-seven percent of cases were idiopathic, 5% were congenital and the remaining cases had a defined precipitant. Neurological features were the most prevalent, but cardiac involvement accounted for 42% of presenting features. The overall median number of plasma exchanges (PEXs) to remission was 15; between April 2002 and December 2003, the median number of PEXs was 19 and it was 12 between January 2004 and December 2006 ( P < 0·0001). In the latter period, adjuvant therapies were reduced, but Rituximab was increased. ADAMTS 13 (a disintegrin and metalloproteinase with a thrombospondin type 1 motif, member 13) activity was <10% in 74% and 95% of these cases had positive IgG antibodies to ADAMTS 13. Renal impairment and delayed normalisation of platelet count were the main differences between idiopathic and secondary TTP. [ABSTRACT FROM AUTHOR]

Background The Personal Child Health Record (PCHR) is a booklet given to parents in the UK, following the birth of a child, to be used as the main record of their growth, development and uptake of preventative health services. The national standard PCHR has been available since April 2004. The aim of this survey was to explore parental views of the ‘new’ PCHR, their experiences in receiving it, and its subsequent use, focusing on specific issues of current debate among health professionals. Methods A parental questionnaire ( n = 89) was administered in July 2004, in 10 child health clinics located in two primary care trusts; one in central London and the other in Buckinghamshire. Results Nearly all parents (98%) reported that they used the PCHR as a record of their child's health and development and 92% reported that they ‘always’ took it with them when seeing healthcare staff about their child. Some parents (22%) indicated that they had not been given a satisfactory explanation as to how to use the PCHR, at the time it was issued to them. Parents reported that health visitors were more likely than other health professionals to use the PCHR both to obtain information about their child and to record information. The majority of respondents (78%) were happy for the level of maternal education to be documented in their child's PCHR. Conclusions Parents used, appreciated and liked the design of the national standard PCHR. Health visitors and primary care staff used the PCHR more than secondary care staff. The potential benefits of the PCHR will only be maximized if other healthcare professionals respond by using it. [ABSTRACT FROM AUTHOR]

Objectives To describe the multicenter clinical databases that exist in the United Kingdom, to report on their quality, to explore which organizational and managerial features are associated with high quality, and to make recommendations for improvements. Design Cross sectional survey, with interviews with database custodians and search of electronic bibliographic database (PubMed). Studies reviewed 105 clinical databases across the United Kingdom. Results Clinical databases existed in all areas of health care, but their distribution was uneven--cancer and surgery were better covered than mental health and obstetrics. They varied greatly in age, size, growth rate, and geographical areas covered. Their scope (and thus their potential uses) and the quality of the data collected also varied. The latter was not associated with any organizational characteristics. Despite impressive achievements, many faced substantial financial uncertainty. Considerable scope existed for improvements: greater use of nationally approved codes; more support from relevant professional organizations; greater involvement by nurses, allied health professionals, managers, and laypeople in database management teams; and more attention to data security and ensuring patient confidentiality. With some notable exceptions, the audit and research potential of most databases had not been realized: half the databases had each produced only four or fewer peer reviewed research articles. Conclusions At least one clinical database support unit is needed in the United Kingdom to provide assistance in organization and management, information technology, epidemiology, and statistics. Without such an initiative, the variable picture of databases reported here is likely to persist and their potential not be realized. [ABSTRACT FROM AUTHOR]

Abstract Objectives To analyse simple national statistics and survival data collected in the central cardiac audit database after treatment for congenital heart disease and to provide long term comparative statistics for each contributing centre. Design Prospective, longitudinal, observational, national cohort survival study. Setting UK central cardiac audit database. Main outcome measures Survival at 30 days and one year after treatment in the year April 2000-March 2001, assessed by using both volunteered life status and independently validated life status through the Office for National Statistics, using the patient's unique NHS number, or the general register offices of Scotland and Northern Ireland. Institutional results following a group of six benchmark operations and three benchmark catheterisation procedures. Results Since April 2000 data have been received from all 13 UK tertiary centres performing cardiac surgery or therapeutic cardiac catheterisation in children with congenital heart disease. Altogether 3666 surgical procedures and 1828 therapeutic catheterisations were performed. Central tracking of mortality identified 469 deaths, 194 occurring within 30 days and 275 later. Forty two of the 194 deaths within 30 days were detectedby central tracking but not by volunteered data. For surgery overall, survival at 30 days was 94.9%, falling to 91.2% at oneyear; this effect was most marked for infants. For therapeutic catheterisation survival at 30 days was 99.1%, falling to 98.1% atone year. Survival of individual centres or individual operators did not differ from the national average after benchmark procedures.Conclusions Independent data validation is essential for accurate survival analysis. One year survival gives a more realistic view of outcome than traditional perioperative mortality. Currently no detectable difference exists in survival between any of the 13 UK tertiary congenital heart disease centres but confidence intervals for small centres a... [ABSTRACT FROM AUTHOR]

ABSTRACT Objective To compare a health and a social service register of children with disability in order to assess their potential for planning services. Design Descriptive. Setting Children with disability resident in North Tyneside, a Local Government Authority in England. Main variables studied Disability and its severity. Results There were 1692 children on the health register and 83 on the social service register. Only 20% of the children with the most severe disability were on the social service register. There was good agreement between parents' and paediatricians' rating of severity for the children with the most severe disability. Although the health register had details of all children with disability, it did not record details of current needs. Conclusions The social service register did not provide data about all children with disability, and in particular only listed 20% of the children with the most severe disability. Therefore, the social service register does not appear suitable for providing data for overall planning of services, although it is helpful in describing and co-ordinating the care of a smaller number of children and families whose problems were active, complex and unresolved, and where social services had an active role. [ABSTRACT FROM AUTHOR]

The article presents information on personal data security of patients with genitourinary abnormalities. Great Britain's General Medical Council (GMC) has laid some rules regarding confidentiality and disclosure of the data. GMC asserts confidentiality of personal data however, some authorities like housing, employment insurance and occupational physicians can gain access to it without patient's consent.

The author reflects on the reliability of the statistics on sexually transmitted disease in Great Britain. In the author's view, even though the notification system and statistics in the country are better than in most countries, there are several drawbacks and omissions. For example, the notified figures relate to the number of cases, not patients, which means that a patient can reappear several times in the published statistics for a year, and can do so for several different reasons.

This article presents a look at the role of Great Britain's National Health Service in the British government's plan to make medical records available on a national database. According to the author, the plan is no longer in effect, but was to be used by general practitioners and hospitals to research a patient's history of medicine, adverse reactions, and allergies.

The author reflects on the role of occupational physicians in the implementation of the legislative bill Access to Medical Reports Act 1988 (AMRA) in Great Britain. He stresses that the guidelines set by some medical organizations such as the General Medical Council, British Medical Association, and the Faculty of Occupational Medicine tend to contradict with those of the AMRA. The author emphasizes the need for AMRA to have a specified application depending on various circumstances.

Offers a look at data collection in medical care as well as validation of clinical data and the methods used to evaluate outcomes. Collection of data regarding cardiac surgeries in Great Britain; Issues of patient privacy and confidentiality; Pressures for and against keeping on computer record traceable information about individuals while respecting their privacy; Creation of specialty and disease specific databases for research purposes.

Editorial. Discusses the risks involved in the efforts of Great Britain's General Medical Council (GMC) to update its policies on confidentiality and the use of patient information. Impact of population screening and patient registries on advances in medical research; How patient consent may foster systematic bias and invalidate observational study findings; Drawbacks of the adoption of a requirement for the anonymization of patient data; Outlook for the revision of British data protection law.

Comments on the reporting of adverse event monitoring in Great Britain. Aims of the post-marketing `green form' scheme; Significance of the collected data.

The article presents a study on the significance of an organized patients' record office in a mental hospital occupational program in Great Britain. The study was conducted with the Rehabilitation Officer at the Ministry of Labour's Industrial Rehabilitation Unit (IRU) along with his staff. Cooperation between the supervisor of the IRU records section and an administrative nurse led to the establishment of a patients' record office in which information about the employment and payment of patients is recorded. The office is staffed by patients and aids their rehabilitation and resettlement in clerical work. The value of such an office for a mental hospital's rehabilitation program is discussed.

The article reports on the National Health Service Evidence update for ethnicity and health in Great Britain. It states that the National Health Service will have major challenges concerning the cancer incidence in minority ethnic population in the country. On the other hand, the National Cancer Intelligence Network analysis found that black people were twice as likely to get stomach cancer than white people and black men were three times more prone to prostate cancer than white men.

This article reports that Members of Parliament in Great Britain are critical of the two year delay in implementing electronic patient records in the National Health Service (NHS). A report from a cross-party committee says that confusion about what information should be included and a lack of communication with physicians are the causes of the delay. The report further charges that the centralised approach to the NHS IT programme has managed to irritate the local physician and NHS staff who are losing faith in the system before it begins.

Examines the progress of the National Health Service IT program for electronic care record systems. How technical difficulties and the lack of support from GPs has delayed the program; Launching of a publicity campaign to win the hearts and minds of physicians; What the system will do; First deployment schedule from the IT group; Hopes that a formula can be found to settle the contentious issues of security and confidentiality.

Reports that National Health Service staff are cheating figures on government reports in an effort to meet certain targets and goals established by the government of Great Britain according to a report from a committee of Members of Parliament (MP). Excerpts from the report, suggesting the accident and emergency (A&E) departments manipulated the waiting times of patients in need of A&E; Number of patients that allegedly lost their vision because of delays in the system as the result of the drive to meet new outpatient appointments, according to Dr. Richard Harrad; Comments from Harrad; Failings in the way the targets worked; Why government targets are necessary.

Reports the decision of Nursing and Midwifery Council members to redraw the register for community and public health in Great Britain. Advantages of simplification of the registers for nurses and midwives; Aims of the register simplification; Competency of nurses joining the register for community and public health practitioners.