Comparing routine inpatient data and death records as a means of identifying children and young people with life limiting conditions

Background Recent estimates of the number of children and young people with life limiting conditions derived from routine inpatient data are higher than earlier estimates using death record data. Aim To compare routine inpatient data and death records as means of identifying life limiting conditions in children and young people. Design Two national cohorts of children and young people with a life limiting condition (primary cohort from England with a comparator cohort from Scotland) were identified using linked routinely collected healthcare and administrative data. Participants 37563 children and young people with a life limiting condition in England who died between 1 April 2001 and 30 March 2015 and 2249 children and young people with a life limiting condition in Scotland who died between 1 April 2003 and 30 March 2014. Results In England, 16642 (57%) non-neonatal cohort members had a life limiting condition recorded as the underlying cause of death; 3364 (12%) had a life limiting condition -related condition recorded as the underlying cause and 3435 (12%) had life limiting conditions recorded only among contributing causes. 5651 (19%) non-neonates and 3443 (41%) neonates had no indication of a life limiting condition recorded in their death records. Similar results were seen in Scotland (overall, 16% had no indication of life limiting conditions). In both cohorts, the recording of life limiting condition was highest amongst those with haematology or oncology diagnoses and lowest for genitourinary and gastrointestinal diagnoses

Changing Place of Death in Children who died after discharge from Paediatric Intensive Care Units : a national, data linkage study

Background: Although child mortality is decreasing, more than half of all deaths in childhood occur in children with a life-limiting condition whose death may be expected. Aim: To assess trends in place of death and identify characteristics of children who died in the community after discharge from paediatric intensive care unit. Design: National data linkage study. Setting/participants: All children resident in England and Wales when admitted to a paediatric intensive care unit in the United Kingdom (1 January 2004 and 31 December 2014) were identified in the Paediatric Intensive Care Audit Network dataset. Linkage to death certificate data was available up to the end of 2014. Place of death was categorised as hospital (hospital or paediatric intensive care unit) or community (hospice, home or other) for multivariable logistic modelling. Results: The cohort consisted of 110,328 individuals. In all, 7709 deaths occurred after first discharge from paediatric intensive care unit. Among children dying, the percentage in-hospital at the time of death decreased from 83.8% in 2004 to 68.1% in 2014; 852 (0.8%) of children were discharged to palliative care. Children discharged to palliative care were eight times more likely to die in the community than children who died and had not been discharged to palliative care (odds ratio = 8.06 (95% confidence interval = 6.50–10.01)). Conclusions: The proportion of children dying in hospital is decreasing, but a large proportion of children dying after discharge from paediatric intensive care unit continue to die in hospital. The involvement of palliative care at the point of discharge has the potential to offer choice around place of care and death for these children and families

Importance of Health and Social Care Research into Gender and Sexual Minority Populations in Nepal

Despite progressive legislative developments and increased visibility of sexual and gender minority populations in the general population, mass media often report that this population face a wide range of discrimination and inequalities. LGBT (lesbian, gay, and bisexual, and transgender) populations have not been considered as priority research populations in Nepal. Research in other geographical settings has shown an increased risk of poor mental health, violence, and suicide and higher rates of smoking, as well as alcohol and drugs use among LGBT populations. They are also risk for lifestyle-related illness such as cancer, diabetes, and heart diseases. Currently, in Nepal, there is a lack of understanding of health and well-being, social exclusion, stigma, and discrimination as experienced by these populations. Good-quality public health research can help design and implement targeted interventions to the sexual and gender minority populations of Nepal

Socially-marketed rapid diagnostic tests and ACT in the private sector: ten years of experience in Cambodia.

Whilst some populations have recently experienced dramatic declines in malaria, the majority of those most at risk of Plasmodium falciparum malaria still lack access to effective treatment with artemisinin combination therapy (ACT) and others are already facing parasites resistant to artemisinins.In this context, there is a crucial need to improve both access to and targeting of ACT through greater availability of good quality ACT and parasitological diagnosis. This is an issue of increasing urgency notably in the private commercial sector, which, in many countries, plays an important role in the provision of malaria treatment. The Affordable Medicines Facility for malaria (AMFm) is a recent initiative that aims to increase the provision of affordable ACT in public, private and NGO sectors through a manufacturer-level subsidy. However, to date, there is little documented experience in the programmatic implementation of subsidized ACT in the private sector. Cambodia is in the unique position of having more than 10 years of experience not only in implementing subsidized ACT, but also rapid diagnostic tests (RDT) as part of a nationwide social marketing programme. The programme includes behaviour change communication and the training of private providers as well as the sale and distribution of Malarine, the recommended ACT, and Malacheck, the RDT. This paper describes and evaluates this experience by drawing on the results of household and provider surveys conducted since the start of the programme. The available evidence suggests that providers' and consumers' awareness of Malarine increased rapidly, but that of Malacheck much less so. In addition, improvements in ACT and RDT availability and uptake were relatively slow, particularly in more remote areas.The lack of standardization in the survey methods and the gaps in the data highlight the importance of establishing a clear system for monitoring and evaluation for similar initiatives. Despite these limitations, a number of important lessons can still be learnt. These include the importance of a comprehensive communications strategy and of a sustained and reliable supply of products, with attention to the geographical reach of both. Other important challenges relate to the difficulty in incentivising providers and consumers not only to choose the recommended drug, but to precede this with a confirmatory blood test and ensure that providers adhere to the test results and patients to the treatment regime. In Cambodia, this is particularly complicated due to problems inherent to the drug itself and the emergence of artemisinin resistance

Arthroscopic washout of the knee: a procedure in decline.

BACKGROUND: Osteoarthritis (OA) of the knee is a chronic, progressive condition which often requires surgical intervention. The evidence for the benefits of arthroscopic debridement or washout for knee OA is weak and arthroscopy is currently only indicated in the UK if there is a history of mechanical locking of the knee. OBJECTIVES: To investigate whether there has been any change in the number of arthroscopies performed in the UK since the 2007 NICE guidance on knee arthroscopy and the 2008 Cochrane review of arthroscopic debridement for OA of the knee. METHODS: We interrogated data from the Hospital Episodes Statistics (HES) database with Office of Population Censuses and Surveys-4 (OPSC-4) codes pertaining to therapeutic endoscopic operations in the 60-74 year old and 75 and over age groups. RESULTS: The number of arthroscopic knee interventions in the UK decreased overall from 2000 to 2012, with arthroscopic irrigations decreasing the most by 39.6 per 100,000 population (80%). However, the number of arthroscopic meniscal resections increased by 105.3 per 100,000 (230%) population. These trends were mirrored in both the 60-74 and 75 and over age groups. CONCLUSIONS: Knee arthroscopy in the 60-74 and 75 and over age groups appears to be decreasing but there is still a large and increasing number of arthroscopic meniscal resections being performed

Data linkage errors in hospital administrative data when applying a pseudonymisation algorithm to paediatric intensive care records.

OBJECTIVES: Our aim was to estimate the rate of data linkage error in Hospital Episode Statistics (HES) by testing the HESID pseudoanonymisation algorithm against a reference standard, in a national registry of paediatric intensive care records. SETTING: The Paediatric Intensive Care Audit Network (PICANet) database, covering 33 paediatric intensive care units in England, Scotland and Wales. PARTICIPANTS: Data from infants and young people aged 0-19 years admitted between 1 January 2004 and 21 February 2014. PRIMARY AND SECONDARY OUTCOME MEASURES: PICANet admission records were classified as matches (records belonging to the same patient who had been readmitted) or non-matches (records belonging to different patients) after applying the HESID algorithm to PICANet records. False-match and missed-match rates were calculated by comparing results of the HESID algorithm with the reference standard PICANet ID. The effect of linkage errors on readmission rate was evaluated. RESULTS: Of 166,406 admissions, 88,596 were true matches (where the same patient had been readmitted). The HESID pseudonymisation algorithm produced few false matches (n=176/77,810; 0.2%) but a larger proportion of missed matches (n=3609/88,596; 4.1%). The true readmission rate was underestimated by 3.8% due to linkage errors. Patients who were younger, male, from Asian/Black/Other ethnic groups (vs White) were more likely to experience a false match. Missed matches were more common for younger patients, for Asian/Black/Other ethnic groups (vs White) and for patients whose records had missing data. CONCLUSIONS: The deterministic algorithm used to link all episodes of hospital care for the same patient in England has a high missed match rate which underestimates the true readmission rate and will produce biased analyses. To reduce linkage error, pseudoanonymisation algorithms need to be validated against good quality reference standards. Pseudonymisation of data 'at source' does not itself address errors in patient identifiers and the impact these errors have on data linkage.Economic and Social Research Council (ESRC) National Centre for Research Methods (NCRM), grant number ES/F035098/1

Sexual orientation and symptoms of common mental disorder or low wellbeing: combined meta-analysis of 12 UK population health surveys

Background Previous studies have indicated increased risk of mental disorder symptoms, suicide and substance misuse in lesbian, gay and bisexual (LGB) adults, compared to heterosexual adults. Our aims were to determine an estimate of the association between sexual orientation identity and poor mental health and wellbeing among adults from 12 population surveys in the UK, and to consider whether effects differed for specific subgroups of the population. Methods Individual data were pooled from the British Cohort Study 2012, Health Survey for England 2011, 2012 and 2013, Scottish Health Survey 2008 to 2013, Longitudinal Study of Young People in England 2009/10 and Understanding Society 2011/12. Individual participant meta-analysis was used to pool estimates from each study, allowing for between-study variation. Results Of 94,818 participants, 1.1 % identified as lesbian/gay, 0.9 % as bisexual, 0.8 % as ‘other’ and 97.2 % as heterosexual. Adjusting for a range of covariates, adults who identified as lesbian/gay had higher prevalence of common mental disorder when compared to heterosexuals, but the association was different in different age groups: apparent for those under 35 (OR = 1.78, 95 % CI 1.40, 2.26), weaker at age 35–54.9 (OR = 1.42, 95 % CI 1.10, 1.84), but strongest at age 55+ (OR = 2.06, 95 % CI 1.29, 3.31). These effects were stronger for bisexual adults, similar for those identifying as ‘other’, and similar for 'low wellbeing'. Conclusions In the UK, LGB adults have higher prevalence of poor mental health and low wellbeing when compared to heterosexuals, particularly younger and older LGB adults. Sexual orientation identity should be measured routinely in all health studies and in administrative data in the UK in order to influence national and local policy development and service delivery. These results reiterate the need for local government, NHS providers and public health policy makers to consider how to address inequalities in mental health among these minority groups

Measuring change in health care equity using small-area administrative data - evidence from the English NHS 2001-2008

This study developed a method for measuring change in socio-economic equity in health care utilisation using small-area level administrative data. Our method provides more detailed information on utilisation than survey data but only examines socio-economic differences between neighbourhoods rather than individuals. The context was the English NHS from 2001 to 2008, a period of accelerated expenditure growth and pro-competition reform. Hospital records for all adults receiving non-emergency hospital care in the English NHS from 2001 to 2008 were aggregated to 32,482 English small areas with mean population about 1500 and combined with other small-area administrative data. Regression models of utilisation were used to examine year-on-year change in the small-area association between deprivation and utilisation, allowing for population size, age-sex composition and disease prevalence including (from 2003 to 2008) cancer, chronic kidney disease, coronary heart disease, diabetes, epilepsy, hypertension, hypothyroidism, stroke, transient ischaemic attack and (from 2006 to 2008) atrial fibrillation, chronic obstructive pulmonary disease, obesity and heart failure. There was no substantial change in small-area associations between deprivation and utilisation for outpatient visits, hip replacement, senile cataract, gastroscopy or coronary revascularisation, though overall non-emergency inpatient admissions rose slightly faster in more deprived areas than elsewhere. Associations between deprivation and disease prevalence changed little during the period, indicating that observed need did not grow faster in more deprived areas than elsewhere. We conclude that there was no substantial deterioration in socio-economic equity in health care utilisation in the English NHS from 2001 to 2008, and if anything, there may have been a slight improvement

Improving outcomes for people in mental health crisis: a rapid synthesis of the evidence for available models of care

BACKGROUND: Crisis Concordat was established to improve outcomes for people experiencing a mental health crisis. The Crisis Concordat sets out four stages of the crisis care pathway: (1) access to support before crisis point; (2) urgent and emergency access to crisis care; (3) quality treatment and care in crisis; and (4) promoting recovery. OBJECTIVES: To evaluate the clinical effectiveness and cost-effectiveness of the models of care for improving outcomes at each stage of the care pathway. DATA SOURCES: Electronic databases were searched for guidelines, reviews and, where necessary, primary studies. The searches were performed on 25 and 26 June 2014 for NHS Evidence, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, NHS Economic Evaluation Database, and the Health Technology Assessment (HTA) and PROSPERO databases, and on 11 November 2014 for MEDLINE, PsycINFO and the Criminal Justice Abstracts databases. Relevant reports and reference lists of retrieved articles were scanned to identify additional studies. STUDY SELECTION: When guidelines covered a topic comprehensively, further literature was not assessed; however, where there were gaps, systematic reviews and then primary studies were assessed in order of priority. STUDY APPRAISAL AND SYNTHESIS METHODS: Systematic reviews were critically appraised using the Risk Of Bias In Systematic reviews assessment tool, trials were assessed using the Cochrane risk-of-bias tool, studies without a control group were assessed using the National Institute for Health and Care Excellence (NICE) prognostic studies tool and qualitative studies were assessed using the Critical Appraisal Skills Programme quality assessment tool. A narrative synthesis was conducted for each stage of the care pathway structured according to the type of care model assessed. The type and range of evidence identified precluded the use of meta-analysis. RESULTS AND LIMITATIONS: One review of reviews, six systematic reviews, nine guidelines and 15 primary studies were included. There was very limited evidence for access to support before crisis point. There was evidence of benefits for liaison psychiatry teams in improving service-related outcomes in emergency departments, but this was often limited by potential confounding in most studies. There was limited evidence regarding models to improve urgent and emergency access to crisis care to guide police officers in their Mental Health Act responsibilities. There was positive evidence on clinical effectiveness and cost-effectiveness of crisis resolution teams but variability in implementation. Current work from the Crisis resolution team Optimisation and RElapse prevention study aims to improve fidelity in delivering these models. Crisis houses and acute day hospital care are also currently recommended by NICE. There was a large evidence base on promoting recovery with a range of interventions recommended by NICE likely to be important in helping people stay well. CONCLUSIONS AND IMPLICATIONS: Most evidence was rated as low or very low quality, but this partly reflects the difficulty of conducting research into complex interventions for people in a mental health crisis and does not imply that all research was poorly conducted. However, there are currently important gaps in research for a number of stages of the crisis care pathway. Particular gaps in research on access to support before crisis point and urgent and emergency access to crisis care were found. In addition, more high-quality research is needed on the clinical effectiveness and cost-effectiveness of mental health crisis care, including effective components of inpatient care, post-discharge transitional care and Community Mental Health Teams/intensive case management teams. STUDY REGISTRATION: This study is registered as PROSPERO CRD42014013279. FUNDING: The National Institute for Health Research HTA programme

Molecular testing for Lynch syndrome in people with colorectal cancer: systematic reviews and economic evaluation

This is the final version of the article. Available from the publisher via the DOI in this record.BACKGROUND: Inherited mutations in deoxyribonucleic acid (DNA) mismatch repair (MMR) genes lead to an increased risk of colorectal cancer (CRC), gynaecological cancers and other cancers, known as Lynch syndrome (LS). Risk-reducing interventions can be offered to individuals with known LS-causing mutations. The mutations can be identified by comprehensive testing of the MMR genes, but this would be prohibitively expensive in the general population. Tumour-based tests - microsatellite instability (MSI) and MMR immunohistochemistry (IHC) - are used in CRC patients to identify individuals at high risk of LS for genetic testing. MLH1 (MutL homologue 1) promoter methylation and BRAF V600E testing can be conducted on tumour material to rule out certain sporadic cancers. OBJECTIVES: To investigate whether testing for LS in CRC patients using MSI or IHC (with or without MLH1 promoter methylation testing and BRAF V600E testing) is clinically effective (in terms of identifying Lynch syndrome and improving outcomes for patients) and represents a cost-effective use of NHS resources. REVIEW METHODS: Systematic reviews were conducted of the published literature on diagnostic test accuracy studies of MSI and/or IHC testing for LS, end-to-end studies of screening for LS in CRC patients and economic evaluations of screening for LS in CRC patients. A model-based economic evaluation was conducted to extrapolate long-term outcomes from the results of the diagnostic test accuracy review. The model was extended from a model previously developed by the authors. RESULTS: Ten studies were identified that evaluated the diagnostic test accuracy of MSI and/or IHC testing for identifying LS in CRC patients. For MSI testing, sensitivity ranged from 66.7% to 100.0% and specificity ranged from 61.1% to 92.5%. For IHC, sensitivity ranged from 80.8% to 100.0% and specificity ranged from 80.5% to 91.9%. When tumours showing low levels of MSI were treated as a positive result, the sensitivity of MSI testing increased but specificity fell. No end-to-end studies of screening for LS in CRC patients were identified. Nine economic evaluations of screening for LS in CRC were identified. None of the included studies fully matched the decision problem and hence a new economic evaluation was required. The base-case results in the economic evaluation suggest that screening for LS in CRC patients using IHC, BRAF V600E and MLH1 promoter methylation testing would be cost-effective at a threshold of £20,000 per quality-adjusted life-year (QALY). The incremental cost-effectiveness ratio for this strategy was £11,008 per QALY compared with no screening. Screening without tumour tests is not predicted to be cost-effective. LIMITATIONS: Most of the diagnostic test accuracy studies identified were rated as having a risk of bias or were conducted in unrepresentative samples. There was no direct evidence that screening improves long-term outcomes. No probabilistic sensitivity analysis was conducted. CONCLUSIONS: Systematic review evidence suggests that MSI- and IHC-based testing can be used to identify LS in CRC patients, although there was heterogeneity in the methods used in the studies identified and the results of the studies. There was no high-quality empirical evidence that screening improves long-term outcomes and so an evidence linkage approach using modelling was necessary. Key determinants of whether or not screening is cost-effective are the accuracy of tumour-based tests, CRC risk without surveillance, the number of relatives identified for cascade testing, colonoscopic surveillance effectiveness and the acceptance of genetic testing. Future work should investigate screening for more causes of hereditary CRC and screening for LS in endometrial cancer patients. STUDY REGISTRATION: This study is registered as PROSPERO CRD42016033879. FUNDING: The National Institute for Health Research Health Technology Assessment programme.Funding for this study was provided by the Health Technology Assessment programme of the National Institute for Health Researc