Public awareness in Wales of the UK Yellow Card scheme for reporting suspected adverse drug reactions.

We used the HealthWise Wales (HWW) platform to explore public knowledge about the UK Yellow Card scheme (YCS), the spontaneous reporting scheme for suspected adverse drug reactions (ADRs) and whether a short information video could improve awareness. Members of the public in Wales (n = 1606) completed a questionnaire about the YCS, watched the information video and then completed a follow-up questionnaire. Almost half (46.5%) of respondents said they had previously experienced an ADR (>90% of the ADRs involving prescribed medicines). Before the video, 18% of respondents knew how to report an ADR via the YCS and of these, 34% were from allied-health professions. Immediately after watching it, 71% participants reported knowing how to report and 82% reported being confident to report. If this awareness were maintained, such an approach could contribute to improved reporting of suspected ADRs by the public.

Development of an algorithm for determining smoking status and behaviour over the life course from UK electronic primary care records.

BACKGROUND: Patients' smoking status is routinely collected by General Practitioners (GP) in UK primary health care. There is an abundance of Read codes pertaining to smoking, including those relating to smoking cessation therapy, prescription, and administration codes, in addition to the more regularly employed smoking status codes. Large databases of primary care data are increasingly used for epidemiological analysis; smoking status is an important covariate in many such analyses. However, the variable definition is rarely documented in the literature. METHODS: The Secure Anonymised Information Linkage (SAIL) databank is a repository for a national collection of person-based anonymised health and socio-economic administrative data in Wales, UK. An exploration of GP smoking status data from the SAIL databank was carried out to explore the range of codes available and how they could be used in the identification of different categories of smokers, ex-smokers and never smokers. An algorithm was developed which addresses inconsistencies and changes in smoking status recording across the life course and compared with recorded smoking status as recorded in the Welsh Health Survey (WHS), 2013 and 2014 at individual level. However, the WHS could not be regarded as a "gold standard" for validation. RESULTS: There were 6836 individuals in the linked dataset. Missing data were more common in GP records (6%) than in WHS (1.1%). Our algorithm assigns ex-smoker status to 34% of never-smokers, and detects 30% more smokers than are declared in the WHS data. When distinguishing between current smokers and non-smokers, the similarity between the WHS and GP data using the nearest date of comparison was κ = 0.78. When temporal conflicts had been accounted for, the similarity was κ = 0.64, showing the importance of addressing conflicts. CONCLUSIONS: We present an algorithm for the identification of a patient's smoking status using GP self-reported data. We have included sufficient details to allow others to replicate this work, thus increasing the standards of documentation within this research area and assessment of smoking status in routine data.

Incidence of Campylobacter and Salmonella infections following first prescription for PPI: a cohort study using routine data.

OBJECTIVES: To examine the incidence of Campylobacter and Salmonella infection in patients prescribed proton pump inhibitors (PPIs) compared with controls. METHODS: Retrospective cohort study using anonymous general practitioner (GP) data. Anonymised individual-level records from the Secure Anonymised Information Linkage (SAIL) system between 1990 and 2010 in Wales were selected. Data were available from 1,913,925 individuals including 358,938 prescribed a PPI. The main outcome measures examined included incidence of Campylobacter or Salmonella infection following a prescription for PPI. RESULTS: The rate of Campylobacter and Salmonella infections was already at 3.1-6.9 times that of non-PPI patients even before PPI prescription. The PPI group had an increased hazard rate of infection (after prescription for PPI) of 1.46 for Campylobacter and 1.2 for Salmonella, compared with baseline. However, the non-PPI patients also had an increased hazard ratio with time. In fact, the ratio of events in the PPI group compared with the non-PPI group using the prior event rate ratio was 1.17 (95% CI 0.74-1.61) for Campylobacter and 1.00 (0.5-1.5) for Salmonella. CONCLUSIONS: People who go on to be prescribed PPIs have a greater underlying risk of gastrointestinal (GI) infection beforehand and they have a higher prevalence of risk factors before PPI prescription. The rate of diagnosis of infection is increasing with time regardless of PPI use, and there is no evidence that PPI is associated with an increase in diagnosed GI infection. It is likely that factors associated with the demographic profile of the patient are the main contributors to increased rate of GI infection for patients prescribed PPIs.

An online survey of oral health behaviours and impact on young children and families in Wales.

Introduction Studies outside Wales have consistently reported reduced quality of life as measured by the Early Childhood Oral Health Impact Scale. With relatively high levels of tooth decay in Wales as found through the regular dental surveys, it is important to understand different oral health-related behaviours and impact so that findings can inform oral health promotion in Wales.Methods An oral health questionnaire was made available to volunteers registered with Health Wise Wales. Parents of children (2-6 years old) participated in the study. Frequency analyses were carried out to understand the oral health-related behaviours and regression analysis was carried out to understand the predictors of reported oral health impacts.Results Overall reported oral health impact was low in this study. In total, 20% of parents reported that their child brushed their teeth less than twice a day and 23% reported toothbrushing without adult supervision. Drinking plain water twice a day or more was associated with good oral health in children.Conclusion Overall, reported oral health impact was low, which is likely to be due to under-representation of study participants from the deprived areas in Wales. There is plenty of room for improvement in oral health-related behaviours.

The coding of telephone consultations in UK primary care databases: are we picking up all the calls?

OBJECTIVES: To examine the use of two coding systems used in the THIN UK primary care research database for the coding of telephone encounters between patient and healthcare professional in primary care. This is relevant to other research databases built on GP clinical systems. Consideration of telephone consultations was particularly important during the COVID-19 pandemic as remote interactions between patient and GP are more numerous than before and are likely to remain at a higher frequency. RESULTS: Telephone encounters could either be indicated by a consultation-type code or by a Read code. All three possible combinations (coded by one method, the other method and both) were in use. In 2014, 30% were coded by the consultation-type, 55% by Read codes and 15% by both. In contrast, in 2000, 77% were coded by the consultation-type, 21% by Read codes and 2% by both. This has important implications because national and regional consultation rates by GPs are often estimated from these research databases by looking only at the consultation-type codes and consequently many encounters will not be detected.

HERALD (health economics using routine anonymised linked data).

BACKGROUND: Health economic analysis traditionally relies on patient derived questionnaire data, routine datasets, and outcomes data from experimental randomised control trials and other clinical studies, which are generally used as stand-alone datasets. Herein, we outline the potential implications of linking these datasets to give one single joined up data-resource for health economic analysis. METHOD: The linkage of individual level data from questionnaires with routinely-captured health care data allows the entire patient journey to be mapped both retrospectively and prospectively. We illustrate this with examples from an Ankylosing Spondylitis (AS) cohort by linking patient reported study dataset with the routinely collected general practitioner (GP) data, inpatient (IP) and outpatient (OP) datasets, and Accident and Emergency department data in Wales. The linked data system allows: (1) retrospective and prospective tracking of patient pathways through multiple healthcare facilities; (2) validation and clarification of patient-reported recall data, complementing the questionnaire/routine data information; (3) obtaining objective measure of the costs of chronic conditions for a longer time horizon, and during the pre-diagnosis period; (4) assessment of health service usage, referral histories, prescribed drugs and co-morbidities; and (5) profiling and stratification of patients relating to disease manifestation, lifestyles, co-morbidities, and associated costs. RESULTS: Using the GP data system we tracked about 183 AS patients retrospectively and prospectively from the date of questionnaire completion to gather the following information: (a) number of GP events; (b) presence of a GP 'drug' read codes; and (c) the presence of a GP 'diagnostic' read codes. We tracked 236 and 296 AS patients through the OP and IP data systems respectively to count the number of OP visits; and IP admissions and duration. The results are presented under several patient stratification schemes based on disease severity, functions, age, sex, and the onset of disease symptoms. CONCLUSION: The linked data system offers unique opportunities for enhanced longitudinal health economic analysis not possible through the use of traditional isolated datasets. Additionally, this data linkage provides important information to improve diagnostic and referral pathways, and thus helps maximise clinical efficiency and efficiency in the use of resources.

A retrospective epidemiological study of type 1 diabetes mellitus in wales, UK between 2008 and 2018.

INTRODUCTION: Studies of prevalence and the demographic profile of type 1 diabetes are challenging because of the relative rarity of the condition, however, these outcomes can be determined using routine healthcare data repositories. Understanding the epidemiology of type 1 diabetes allows for targeted interventions and care of this life-affecting condition. OBJECTIVES: To describe the prevalence, incidence and demographics of persons with type 1 diabetes diagnosed in Wales, UK, using the Secure Anonymised Information Linkage (SAIL) Databank. METHODS: Data derived from primary and secondary care throughout Wales available in the SAIL Databank were used to identify people with type 1 diabetes to determine the prevalence and incidence of type 1 diabetes over a 10 year period (2008-18) and describe the demographic and clinical characteristics of this population by age, socioeconomic deprivation and settlement type. The seasonal variation in incidence rates was also examined. RESULTS: The prevalence of type 1 diabetes in 2018 was 0.32% in the whole population, being greater in men compared to women (0.35% vs 0.28% respectively); highest in those aged 15-29 years (0.52%) and living in the most socioeconomically deprived areas (0.38%). The incidence of type 1 diabetes over 10 years was 14.0 cases/100,000 people/year for the whole population of Wales. It was highest in children aged 0-14 years (33.6 cases/100,000 people/year) and areas of high socioeconomic deprivation (16.8 cases/100,000 people/year) and least in those aged 45-60 years (6.5 cases/100,000 people/year) and in areas of low socioeconomic deprivation (11.63 cases/100,000 people/year). A seasonal trend in the diagnoses of type 1 diabetes was observed with higher incidence in winter months. CONCLUSION: This nation-wide retrospective epidemiological study using routine data revealed that the incidence of type 1 diabetes in Wales was greatest in those aged 0-14 years with a higher incidence and prevalence in the most deprived areas. These findings illustrate the need for health-related policies targeted at high deprivation areas to include type 1 diabetes in their remit.

Protocol for a population-based ankylosing spondylitis (PAS) cohort in Wales.

BACKGROUND: To develop a population-based cohort of people with ankylosing spondylitis (AS) in Wales using (1) secondary care clinical datasets, (2) patient-derived questionnaire data and (3) routinely-collected information in order to examine disease history and the health economic cost of AS. METHODS: This data model will include and link (1) secondary care clinician datasets (i.e. electronic patient notes from the rheumatologist) (2) patient completed questionnaires (giving information on disease activity, medication, function, quality of life, work limitations and health service utilisation) and (3) a broad range of routinely collected data (including; GP records, in-patient hospital admission data, emergency department data, laboratory/pathology data and social services databases). The protocol involves the use of a unique and powerful data linkage system which allows datasets to be interlinked and to complement each other. DISCUSSION: This cohort can integrate patient supplied, primary and secondary care data into a unified data model. This can be used to study a range of issues such as; the true economic costs to the health care system and the patient, factors associated with the development of severe disease, long term adverse events of new and existing medication and to understand the disease history of this condition. It will benefit patients, clinicians and health care managers. This study forms a pilot project for the use of routine data/patient data linked cohorts for other chronic conditions.

Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case-control comparison.

OBJECTIVES: To describe the epidemiology of diagnosed hypermobility spectrum disorder (HSD) and Ehlers-Danlos syndromes (EDS) using linked electronic medical records. To examine whether these conditions remain rare and primarily affect the musculoskeletal system. DESIGN: Nationwide linked electronic cohort and nested case-control study. SETTING: Routinely collected data from primary care and hospital admissions in Wales, UK. PARTICIPANTS: People within the primary care or hospital data systems with a coded diagnosis of EDS or joint hypermobility syndrome (JHS) between 1 July 1990 and 30 June 2017. MAIN OUTCOME MEASURES: Combined prevalence of JHS and EDS in Wales. Additional diagnosis and prescription data in those diagnosed with EDS or JHS compared with matched controls. RESULTS: We found 6021 individuals (men: 30%, women: 70%) with a diagnostic code of either EDS or JHS. This gives a diagnosed point prevalence of 194.2 per 100 000 in 2016/2017 or roughly 10 cases in a practice of 5000 patients. There was a pronounced gender difference of 8.5 years (95% CI: 7.70 to 9.22) in the mean age at diagnosis. EDS or JHS was not only associated with high odds for other musculoskeletal diagnoses and drug prescriptions but also with significantly higher odds of a diagnosis in other disease categories (eg, mental health, nervous and digestive systems) and higher odds of a prescription in most disease categories (eg, gastrointestinal and cardiovascular drugs) within the 12 months before and after the first recorded diagnosis. CONCLUSIONS: EDS and JHS (since March 2017 classified as EDS or HSD) have historically been considered rare diseases only affecting the musculoskeletal system and soft tissues. These data demonstrate that both these assertions should be reconsidered.

Cohort profile: HealthWise Wales. A research register and population health data platform with linkage to National Health Service data sets in Wales.

PURPOSE: Recruitment and follow-up in epidemiological studies are time-consuming and expensive. Combining online data collection with a register of individuals who agree to be contacted about research opportunities provides an efficient, cost-effective platform for population-based research. HealthWise Wales (HWW) aims to facilitate research by recruiting a cohort of individuals who have consented to be informed about research projects, advertising studies to participants, supporting data collection on specific topics and providing access to linked healthcare data for secondary analyses. In this paper, we describe the design of the project, ongoing data collection, methods of data linkage to routine healthcare records, baseline characteristics of participants, the strengths and limitations of the register, and the ways in which the project can support researchers. PARTICIPANTS: Adults (aged 16 years and above) living or receiving their healthcare in Wales are eligible for inclusion. Participants consent to be contacted for follow-up data collection and for their details to be used to access their routinely collected National Health Service records for research purposes. Data are collected using a web-based application, with new questionnaires added every 6 months. Data collection on sociodemographic and lifestyle factors is repeated at intervals of 2-3 years. Recruitment is ongoing, with 21 779 participants alive and currently registered. FINDINGS TO DATE: 99% of participants have complete information on age and sex, and 64% have completed questionnaires on sociodemographic and lifestyle factors. These data can be linked with national health databases within the Secure Anonymised Information Linkage (SAIL) databank, with 93% of participants matching a record in SAIL. HWW has facilitated the recruitment of 43 826 participants to 15 different studies. FUTURE PLANS: The medium-term goal for the project is to enrol at least 50 000 adults. Recruitment strategies are being devised to achieve a study sample that closely models the population of Wales. Potential biosampling methods are also currently being explored.

The Cost of Ankylosing Spondylitis in the UK Using Linked Routine and Patient-Reported Survey Data.

BACKGROUND: Ankylosing spondylitis (AS) is a chronic inflammatory arthritis which typically begins in early adulthood and impacts on healthcare resource utilisation and the ability to work. Previous studies examining the cost of AS have relied on patient-reported questionnaires based on recall. This study uses a combination of patient-reported and linked-routine data to examine the cost of AS in Wales, UK. METHODS: Participants in an existing AS cohort study (n = 570) completed questionnaires regarding work status, out-of-pocket expenses, visits to health professionals and disease severity. Participants gave consent for their data to be linked to routine primary and secondary care clinical datasets. Health resource costs were calculated using a bottom-up micro-costing approach. Human capital costs methods were used to estimate work productivity loss costs, particularly relating to work and early retirement. Regression analyses were used to account for age, gender, disease activity. RESULTS: The total cost of AS in the UK is estimated at £19016 per patient per year, calculated to include GP attendance, administration costs and hospital costs derived from routine data records, plus patient-reported non-NHS costs, out-of-pocket AS-related expenses, early retirement, absenteeism, presenteeism and unpaid assistance costs. The majority of the cost (>80%) was as a result of work-related costs. CONCLUSION: The major cost of AS is as a result of loss of working hours, early retirement and unpaid carer's time. Therefore, much of AS costs are hidden and not easy to quantify. Functional impairment is the main factor associated with increased cost of AS. Interventions which keep people in work to retirement age and reduce functional impairment would have the greatest impact on reducing costs of AS. The combination of patient-reported and linked routine data significantly enhanced the health economic analysis and this methodology that can be applied to other chronic conditions.

Evidence for a persistent, major excess in all cause admissions to hospital in children with type-1 diabetes: results from a large Welsh national matched community cohort study.

OBJECTIVES: To estimate the excess in admissions associated with type1 diabetes in childhood. DESIGN: Matched-cohort study using anonymously linked hospital admission data. SETTING: Brecon Group Register of new cases of childhood diabetes in Wales linked to hospital admissions data within the Secure Anonymised Information Linkage Databank. POPULATION: 1577 Welsh children (aged between 0 and 15 years) from the Brecon Group Register with newly-diagnosed type-1 diabetes between 1999-2009 and 7800 population controls matched on age, sex, county, and deprivation, randomly selected from the local population. MAIN OUTCOME MEASURES: Difference in all-cause hospital admission rates, 30-days post-diagnosis until 31 May 2012, between participants and controls. RESULTS: Children with type-1 diabetes were followed up for a total of 12,102 person years and were at 480% (incidence rate ratios, IRR 5.789, (95% CI 5.34 to 6.723), p<0.0001) increased risk of hospital admission in comparison to matched controls. The highest absolute excess of admission was in the age group of 0-5 years, with a 15.4% (IRR 0.846, (95% CI 0.744 to 0.965), p=0.0061) reduction in hospital admissions for every 5-year increase in age at diagnosis. A trend of increasing admission rates in lower socioeconomic status groups was also observed, but there was no evidence of a differential rate of admissions between men and women when adjusted for background risk. Those receiving outpatient care at large centres had a 16.1% (IRR 0.839, (95% CI 0.709 to 0.990), p=0.0189) reduction in hospital admissions compared with those treated at small centres. CONCLUSIONS: There is a large excess of hospital admissions in paediatric patients with type-1 diabetes. Rates are highest in the youngest children with low socioeconomic status. Factors influencing higher admission rates in smaller centres (eg, "out of hours resources") need to be explored with the aim of targeting modifiable influences on admission rates.

Obesity in pregnancy: a retrospective prevalence-based study on health service utilisation and costs on the NHS.

OBJECTIVE: To estimate the direct healthcare cost of being overweight or obese throughout pregnancy to the National Health Service in Wales. DESIGN: Retrospective prevalence-based study. SETTING: Combined linked anonymised electronic datasets gathered on a cohort of women enrolled on the Growing Up in Wales: Environments for Healthy Living (EHL) study. Women were categorised into two groups: normal body mass index (BMI; n=260) and overweight/obese (BMI>25; n=224). PARTICIPANTS: 484 singleton pregnancies with available health service records and an antenatal BMI. PRIMARY OUTCOME MEASURE: Total health service utilisation (comprising all general practitioner visits and prescribed medications, inpatient admissions and outpatient visits) and direct healthcare costs for providing these services in the year 2011-2012. Costs are calculated as cost of mother (no infant costs are included) and are related to health service usage throughout pregnancy and 2 months following delivery. RESULTS: There was a strong association between healthcare usage cost and BMI (p<0.001). Adjusting for maternal age, parity, ethnicity and comorbidity, mean total costs were 23% higher among overweight women (rate ratios (RR) 1.23, 95% CI 1.230 to 1.233) and 37% higher among obese women (RR 1.39, 95% CI 1.38 to 1.39) compared with women with normal weight. Adjusting for smoking, consumption of alcohol, or the presence of any comorbidities did not materially affect the results. The total mean cost estimates were £3546.3 for normal weight, £4244.4 for overweight and £4717.64 for obese women. CONCLUSIONS: Increased health service usage and healthcare costs during pregnancy are associated with increasing maternal BMI; this was apparent across all health services considered within this study. Interventions costing less than £1171.34 per person could be cost-effective if they reduce healthcare usage among obese pregnant women to levels equivalent to that of normal weight women.