Maintaining the accuracy of a computer practice register: household index

In this practice, with a family practitioner committee list of 9726 patients, we use a computer register for recall, screening, morbidity data, audit, and repeat prescribing. The computing techniques used to achieve accuracy in maintaining the register are described. After one year of full use the register was validated by using the computer to select a random sample of 200 patients from patients'' computer records that had not been updated recently. Two patients were untraceable, and in only 11 records were errors of information found, none of which was important. We think that it is feasible and valuable to have a household index.     

Palliative Care among Heart Failure Patients in Primary Care: A Comparison to Cancer Patients Using English Family Practice Data

Introduction

Patients with heart failure have a significant symptom burden and other palliative care needs often over a longer period than patients with cancer. It is acknowledged that this need may be unmet but by how much has not been quantified in primary care data at the population level.

Methods

This was the first use of Clinical Practice Research Datalink, the world''s largest primary care database to explore recognition of the need for palliative care. Heart failure and cancer patients who had died in 2009 aged 18 or over and had at least one year of primary care records were identified. A palliative approach to care among patients with heart failure was compared to that among patients with cancer using entry onto a palliative care register as a marker for a palliative approach to care.

Results

Among patients with heart failure, 7% (234/3 122) were entered on the palliative care register compared to 48% (3 669/7 608) of cancer patients. Of heart failure patients on the palliative care register, 29% (69/234) were entered onto the register within a week of their death.

Conclusions

This confirms that the stark inequity in recognition of palliative care needs for people with heart failure in a large primary care dataset. We recommend a move away from prognosis based criteria for palliative care towards a patient centred approach, with assessment of and attention to palliative needs including advance care planning throughout the disease trajectory.     

Hypothermia in the elderly: scope for prevention.

Concern is growing about the number of elderly people dying of hypothermia. A register was compiled of patients over 75 on a general practitioner''s list who were identified from their medical records as being at risk of hypothermia, having two or more established risk factors. Twenty four patients from this register were visited early in winter by a doctor to discuss how hypothermia could be prevented. They were then revisited during very cold weather to see whether they had made any changes. Several improvements to heating arrangements were noted, but the median temperature in the bedrooms of houses with no central heating was 10 degrees C below the World Health Organisation''s recommended temperature. In addition, eight patients were not visited daily. Even with media publicity and visits from carers and a doctor, 17 of the 24 elderly people studied continued to live in an environment in which they were at risk of developing hypothermia.     

Compiling a register of patients with moderate or severe learning disabilities: experience at one United Kingdom general practice

Background Identifying patients with learning disabilities within primary care is central to initiatives for improving the health of this population. UK general practitioners (GPs) receive additional income for maintaining registers of patients with learning disabilities as part of the Quality and Outcomes Framework (QOF), and may opt to provide Directed Enhanced Services (DES), which requires practices to maintain registers of patients with moderate or severe learning disabilities and offer them annual health checks.Objectives This paper describes the development of a register of patients with moderate or severe learning disabilities at one UK general practice.Methods A Read code search of one UK general practice's electronic medical records was conducted in order to identify patients with learning disabilities. Confirmation of diagnoses was sought by scrutinising records and GP verification. Cross-referencing with the practice QOF register of patients with learning disabilities of any severity, and the local authority's list of clients with learning disabilities, was performed.Results Of 15 001 patients, 229 (1.5%) were identified by the Read code search as possibly having learning disabilities. Scrutiny of records and GP verification confirmed 64 had learning disabilities and 24 did not, but the presence or absence of learning disability remained unclear in 141 cases. Cross-referencing with the QOF register (n=81) and local authority list (n=49) revealed little overlap.Conclusion Identifying learning disability and assessing its severity are tasks GPs may be unfamiliar with, and relying on Read code searches may result in under-detection. Further research is needed to define optimum strategies for identifying, cross-referencing and validating practice-based registers of patients with learning disabilities.     

Increasing incidence and mortality from myocardial infarction in Stockholm county.

A study was undertaken to examine trends in the incidence and mortality of myocardial infarction in Sweden. All cases (n = 19908) of myocardial infarction diagnosed in the population of Stockholm county during 1974-80 were identified by means of the cause of death register and the inpatient care register. Information on patients at risk was obtained from the civil registration system. The relative risk of developing, or dying of, myocardial infarction in one specific year, compared with the average for the whole period, was taken as the basis for describing the trends. For men in Stockholm the incidence as well as the mortality was appreciably increased; the annual increase in incidence was 3% and in mortality 4%. There were no signs of decreasing lethality. For women there was an appreciable increase in incidence; for mortality the result was less specific but was compatible with an increase. The observed increases in incidence and mortality appeared to be real and were probably not due to an increasing tendency for patients to seek hospital treatment or for doctors to make the diagnosis. The reason for the increase is unknown.     

Targeting asthma care in general practice using a morbidity index.

OBJECTIVES--To evaluate a morbidity index as a postal surveillance tool in defining previously diagnosed asthmatic patients needing extra education or management; to determine the accuracy of a computerised asthma register in general practice. DESIGN--Postal questionnaire survey of asthmatic patients identified from a computer register. Questionnaire comprised three morbidity questions, two questions about current asthma status, and one about treatments. SETTING--Urban general practice of 8400 patients linked to academic unit. SUBJECTS--853 asthmatic patients of all ages. MAIN OUTCOME MEASURES--Numbers of patients with low, medium, and high morbidity; associations of these groups with age, asthma status, and drugs taken. RESULTS--Two mailings yielded 621 replies (73%); 28 patients (5%) had moved away, leaving 593 for analysis. Attempts were subsequently made to contact 20% sample of non-respondents. 234 respondents (40%) were in the "low morbidity" group, 149 (25%) in the "medium morbidity" group, and 210 (35%) in the "high morbidity" category. 53% of patients perceiving themselves as currently asthmatic (193/362) were in the high morbidity group, but 7% (11/153) who said they were no longer asthmatic and 8% (6/78) who did not believe they had ever been asthmatic were also in that group. High morbidity was also found in 10% (18/185) of those on no treatment, 38% (59/154) of those on bronchodilators alone, and 54% (119/220) of those on inhaled corticosteroids. 25 patients (4%) were wrongly identified as asthmatic; when combined with returns marked "gone away" this gave a disease register accuracy of 91%. CONCLUSIONS--This exercise identified subgroups of previously diagnosed asthmatic patients with high morbidity in general practice who might benefit from extra education and management and revealed some misclassification on the asthma disease register.     

Prediction of strand pairing in antiparallel and parallel beta-sheets using information theory

An information theory approach was developed to predict the alignment of interacting antiparallel and parallel beta-strands. Information scores were derived for the preference of a residue on a beta-strand to be opposite a sequence of residues on an adjacent beta-strand. These scores were used to predict the interstrand register of interacting beta-strands from 10 alternative offset positions either side of the experimentally observed beta-sheet register. The amino acid sequence of an internal beta-strand can be correctly aligned with two beta-strands in a fixed position either side of the strand in 45% of antiparallel and 48% of parallel arrangements. For comparison, when another beta-strand from a nonhomologous protein substitutes the internal beta-strand, the same register is predicted for only 24 and 36% of antiparallel and parallel arrangements. As expected, alignment of a single fixed strand with just a second beta-strand sequence was more difficult, and gave a correct register in 31 and 37% of antiparallel and parallel beta-pairs, respectively. These scores are 10% higher than for two randomly selected beta-strand sequences. In general, prediction accuracy was not improved by information tables that distinguished hydrogen-bonding patterns or beta-strand order. These results will contribute to predicting the arrangement of beta-strands in beta-pleated sheets and protein topology.     

Newly registered elderly patients: who are they and why such delay in the transfer of their medical records?

The time taken to transfer the records of elderly patients registering with a new general practice was investigated. Thirty five (5%) of a total of 671 patients aged 75 and over were entered as new patients on to the age-sex register of an urban group practice during one year. Twenty nine had moved into the area and six had changed their general practitioner for personal and other reasons. An average of 141 (range 71-296) days elapsed before dispatch of their medical records to the new practice. During this period an average of 3·5 (range 0-15) consultations with a general practitioner were recorded, indicating the need of such patients for medical care. The long delays were caused by the processing of medical records at the central register and the transfer of records between family practitioner committees and general practitioners. Delays were most apparent in the time taken for general practitioners to dispatch the necessary documents to the family practitioner committees, and these should be minimised.The use of a summary card written and updated by the general practitioner and retained by the patient would facilitate continuing care should patients change to a new practice. Meanwhile, assessment of elderly patients after registration with a new practice by a member of the primary health care team may identify problems before the records have been transferred and may help the resettlement of these high risk elderly patients.     

Do most practices have an age-sex register? Results of the West Midlands age-sex register study.

A cross sectional study based on all (1260) general practices in the West Midlands was conducted in late 1984 and early 1985. Responses to a postal questionnaire were received from 762 (60.5%) practices, and of these, 387 (50.8%) stated that they had an age-sex register; 104 (13.6%) practices replied that they had definite plans to establish an age-sex register within six months, and a random sample of these was later telephoned to see if the plans had come to fruition. A random telephone sample was also made from the 498 (39.5%) non-responders. It was concluded that the current prevalence of age-sex registers in the West Midlands is 52% (+/- 5% for 95% confidence) of all practices. A register has now been established of 422 practices (35.5% of the total number in the West Midlands) that have an age-sex register. This is being used as a database for other research. The most common reason stated for not having an age-sex register was that it would be too time consuming. Most of the practices that had one stated that it was used for research, disease recording, screening, surveillance, or health education, which implies that the registers are being used.     

Occupational therapy for patients with problems in personal activities of daily living after stroke: systematic review of randomised trials

Objective To determine whether occupational therapy focused specifically on personal activities of daily living improves recovery for patients after stroke.Design Systematic review and meta-analysis.Data sources The Cochrane stroke group trials register, the Cochrane central register of controlled trials, Medline, Embase, CINAHL, PsycLIT, AMED, Wilson Social Sciences Abstracts, Science Citation Index, Social Science Citation, Arts and Humanities Citation Index, Dissertations Abstracts register, Occupational Therapy Research Index, scanning reference lists, personal communication with authors, and hand searching.Review methods Trials were included if they evaluated the effect of occupational therapy focused on practice of personal activities of daily living or where performance in such activities was the target of the occupational therapy intervention in a stroke population. Original data were sought from trialists. Two reviewers independently reviewed each trial for methodological quality. Disagreements were resolved by consensus.Results Nine randomised controlled trials including 1258 participants met the inclusion criteria. Occupational therapy delivered to patients after stroke and targeted towards personal activities of daily living increased performance scores (standardised mean difference 0.18, 95% confidence interval 0.04 to 0.32, P=0.01) and reduced the risk of poor outcome (death, deterioration or dependency in personal activities of daily living) (odds ratio 0.67, 95% confidence interval 0.51 to 0.87, P=0.003). For every 100 people who received occupational therapy focused on personal activities of daily living, 11 (95% confidence interval 7 to 30) would be spared a poor outcome.Conclusions Occupational therapy focused on improving personal activities of daily living after stroke can improve performance and reduce the risk of deterioration in these abilities. Focused occupational therapy should be available to everyone who has had a stroke.     

Implementation of an Electronic Monitoring and Evaluation System for the Antiretroviral Treatment Programme in the Cape Winelands District,South Africa: A Qualitative Evaluation

BackgroundA pragmatic three-tiered approach to monitor the world’s largest antiretroviral treatment (ART) programme was adopted by the South African National Department of Health in 2010. With the rapid expansion of the programme, the limitations of the paper-based register (tier 1) were the catalyst for implementation of the stand-alone electronic register (tier 2), which offers simple digitisation of the paper-based register. This article engages with theory on implementation to identify and contextualise enabling and constraining factors for implementation of the electronic register, to describe experiences and use of the register, and to make recommendations for implementation in similar settings where standardisation of ART monitoring and evaluation has not been achieved.MethodsWe conducted a qualitative evaluation of the roll-out of the register. This comprised twenty in-depth interviews with a diverse sample of stakeholders at facility, sub-district, and district levels of the health system. Facility-level participants were selected across five sub-districts, including one facility per sub-district. Responses were coded and analysed using a thematic approach. An implementation science framework guided interpretation of the data.ConclusionIn this study we found that relative advantage of an intervention and stakeholder engagement are critical to implementation. We suggest that without these aspects of implementation, formative and summative outcomes of implementation at both the adoption and coalface stages of implementation would be negatively affected.     

Development of the CHARIOT Research Register for the Prevention of Alzheimer’s Dementia and Other Late Onset Neurodegenerative Diseases

Background

Identifying cognitively healthy people at high risk of developing dementia is an ever-increasing focus. These individuals are essential for inclusion in observational studies into the natural history of the prodromal and early disease stages and for interventional studies aimed at prevention or disease modification. The success of this research is dependent on having access to a well characterised, representative and sufficiently large population of individuals. Access to such a population remains challenging as clinical research has, historically, focussed on patients with dementia referred to secondary and tertiary services. The primary care system in the United Kingdom allows access to a true prodromal population prior to symptoms emerging and specialist referral. We report the development and recruitment rates of the CHARIOT register, a primary care-based recruitment register for research into the prevention of dementia. The CHARIOT register was designed specifically to support recruitment into observational natural history studies of pre-symptomatic or prodromal dementia stages, and primary or secondary prevention pharmaceutical trials or other prevention strategies for dementia and other cognitive problems associated with ageing.

Methods

Participants were recruited through searches of general practice lists across the west and central London regions. Invitations were posted to individuals aged between 60 and 85 years, without a diagnosis of dementia. Upon consent, a minimum data set of demographic and contact details was extracted from the patient’s electronic health record.

Results

To date, 123 surgeries participated in the register, recruiting a total of 24,509 participants–a response rate of 22.3%. The age, gender and ethnicity profiles of participants closely match that of the overall eligible population. Higher response rates tended to be associated with larger practices (r = 0.34), practices with a larger older population (r = 0.27), less socioeconomically disadvantaged practices (r = 0.68), and practices with a higher proportion of White patients (r = 0.82).

Discussion

Response rates are comparable to other registers reported in the literature, and indicate good interest and support for a research register and for participation in research for the prevention of age-related neurodegenerative diseases and dementia. We consider that the simplicity of the approach means that this system is easily scalable and replicable across the UK and internationally.     

Establishing a twin register in Sri Lanka.

Nearly all twin registers are based in developed countries and there is no twin register in the developing world. Our objectives were to initiate the process of establishing a nationwide twin register in Sri Lanka by starting a volunteer register first and working towards a population-based register. Regular newspaper advertisements, feature articles, radio talks, and television programmes were used to publicise a competition for twins, their parents/relatives and friends requesting them to participate by sending in details of twins. The competition ran from 28 March 1997 for a period of 3 months. It offered prizes for three winners selected by drawing lots. Advertisements highlighted the objective of the competition as establishing a twin register for future research and emphasised that informed consent would be obtained for individual research projects. Those who registered comprise 4602 twin pairs (same sex: male--1564, female--1885; different sex--1153), 80 sets of triplets (same sex: male--17, female--31; different sex--42) and two sets of quadruplets (different sex). The oldest twins, triplets, quadruplets are 85, 46, and 5 years old, respectively; 88.0% of twins are less than 30 years old. Although others have previously used media publicity to enrol twins in twin registers, we believe this to be the first time that twins have been enrolled through competition. We have more young twins, and our gender and zygosity proportions after applying Weinburg's rule do not match the proportions expected from a volunteer twin sample. Establishing a twin register for research purposes has proved possible in a developing country.     

The Southwest of Scotland Structural Chromosomal Abnormalities Database: an assessment of its contribution to genetic counselling in affected families

AIM: To assess the effect of establishing a genetic database on the provision of genetic counselling to individuals and families with structural chromosomal abnormalities. METHOD: For the four year period 1997-2000, we compared all cytogenetics laboratory records with entries on the database to determine its completeness. We assessed the extent to which families had been followed up, compared these findings with a previous four year period (1977-1980) and sought to discover why some families were not followed up. RESULTS: Of 215 probands identified during 1997-2000, 19 (9%) were not recorded on the register. Approximately one third of families were followed up completely, one third were partially followed up and one third had had no follow-up, for a variety of reasons. In this last group, there was evidence that some had received inadequate or incorrect genetic advice. There was no evidence that the database improved follow-up in families with structural chromosome abnormalities. Over 20 years, there has been a downward trend in the proportion of cases referred to the genetic clinic. CONCLUSIONS: Our register can be used to monitor trends in clinical practice but has had no direct effect on the service provided to patients and their families.     

Prevalence of hypospadias in the same geographic region as ascertained by three different registries

Hypospadias birth prevalence may be increasing with maternal exposure to endocrine disrupters. Yet hypospadias registers are hindered by data quality concerns. We compare the birth prevalence per thousand male births (BP) and ascertainment of hypospadias in the South East of England between 1st January 1997 to 31st September 1998 in a population-based hypospadias case register (surgeons' register) 731 cases, BP 3.8, (95% confidence interval 3.7-3.9), the National Congenital Anomaly System (NCAS) 645 cases (88% of surgeons' register), BP 3.4, (95% confidence interval 3.29-3.5) and Hospital Episode Statistics (HES) 221 cases (30% of the surgeons register), BP 1.15 (95% confidence interval 1.1-1.2). There were 191,438 male births (National Statistics). We found considerable differences in birth prevalence estimates and ascertainment according to data source. Compared with the Surgeons' register, the HES under-ascertainment of 10% was possibly explained by procedural weaknesses. NCAS's 70% under-ascertainment is explained by exclusion of so-called mild hypospadias (since 1990). This exclusion does not appear warranted since mild and severe hypospadias probably share aetiology and all require surgery. NCAR's utility could be improved if it returned to including "minor" hypospadias. Meanwhile routine data such as HES are potentially suitable for surveillance of this condition.     

Norwegian Twin Registers and Norwegian twin studies--an overview.

The Norwegian Twin Registers include several sets of population-based sub-registers, and covers twin pairs born between 1895 and today. Except for the missing birth years 1960 to 1967, the register is almost complete. Most of the register contains information about both same-sexed and opposite-sexed twin pairs, except for twin pairs born between 1946 and 1960, where only same-sexed twins are registered. In a substantial part of the register, information about zygosity is obtained, mainly by a mailed questionnaire and in some cases supported by DNA testing. These are the birth years 1915 to 1960 and the birth years 1967 to 1979. Zygosity information is further obtained in the different twin studies derived from the twin register. In 1990 the whole register was made available in a computerized form. Several twin studies have been derived from the different parts of the register. In this article, studies from the two earliest parts of the register are reviewed and grouped by recruitment specifics. Finally, future plans for the register and twin studies are discussed.     

Indirect comparison meta-analysis of aspirin therapy after coronary surgery

Objectives To evaluate the efficacy of low and medium dose aspirin therapy after coronary surgery by using an indirect comparison meta-analysis.Data sources Systematic literature search of Medline, Embase, Cochrane controlled trials register, and trial register sites on the internet.Study selection Outcome was evaluated by angiography and reported as graft occlusion and rate of events in patients. Trials that did not include aspirin as the sole therapy or did not have a placebo control arm were excluded. Articles were assessed for eligibility and quality and grouped according to dosage. The estimated difference in effect of low and medium dose aspirin on graft occlusion was obtained by combining the estimated log relative risks of low dose with placebo and medium dose with placebo.Results For graft occlusion, the medium dose trials yielded a relative risk reduction of 45% compared with 26% for the low dose trials. The greater effect in the medium dose trials is summarised by a relative risk ratio of 0.74 (95% confidence interval 0.52 to 1.06; P = 0.10) for graft occlusion and 0.81 (0.57 to 1.16; P = 0.25) for events in patients.Conclusions Medium dose aspirin may more successfully reduce graft occlusion than low dose regimens within the first year after coronary surgery.