Integrating lived experiences of out-of-hours health services for people with palliative and end-of-life care needs with national datasets for people dying in Scotland in 2016: A mixed methods, multi-stage design.

BACKGROUND: Unscheduled care is used increasingly during the last year of life by people known to have significant palliative care needs. AIM: To document the frequency and patterns of use of unscheduled healthcare by people in their last year of life and understand the experiences and perspectives of patients, families and professionals about accessing unscheduled care out-of-hours. DESIGN: A mixed methods, multi-stage study integrating a retrospective cohort analysis of unscheduled healthcare service use in the last year of life for all people dying in Scotland in 2016 with qualitative data from three regions involving service users, bereaved carers and general practitioners. SETTING: Three contrasting Scottish Health Board regions and national datasets for the whole of Scotland. RESULTS: People who died in Scotland in 2016 (n = 56,407) had 472,360 unscheduled contacts with one of five services: telephone advice, primary care, ambulance service, emergency department and emergency hospital admission. These formed 206,841 individual continuous unscheduled care pathways: 65% starting out-of-hours. When accessing healthcare out-of-hours, patients and carers prioritised safety and a timely response. Their choice of which service to contact was informed by perceptions and previous experiences of potential delays and whether the outcome might be hospital admission. Professionals found it difficult to practice palliative care in a crisis unless the patient had previously been identified. CONCLUSION: Strengthening unscheduled care in the community, together with patient and public information about how to access these services could prevent hospital admissions of low benefit and enhance community support for people living with advanced illness.

Unscheduled and out-of-hours care for people in their last year of life: a retrospective cohort analysis of national datasets.

OBJECTIVES: To analyse patterns of use and costs of unscheduled National Health Service (NHS) services for people in the last year of life. DESIGN: Retrospective cohort analysis of national datasets with application of standard UK costings. PARTICIPANTS AND SETTING: All people who died in Scotland in 2016 aged 18 or older (N=56 407). MAIN OUTCOME MEASURES: Frequency of use of the five unscheduled NHS services in the last 12 months of life by underlying cause of death, patient demographics, Continuous Unscheduled Pathways (CUPs) followed by patients during each care episode, total NHS and per-patient costs. RESULTS: 53 509 patients (94.9%) had at least one contact with an unscheduled care service during their last year of life (472 360 contacts), with 34.2% in the last month of life. By linking patient contacts during each episode of care, we identified 206 841 CUPs, with 133 980 (64.8%) starting out-of-hours. People with cancer were more likely to contact the NHS telephone advice line (63%) (χ2 (4)=1004, p<0.001) or primary care out-of-hours (62%) (χ2 (4)=1924,p<0.001) and have hospital admissions (88%) (χ2 (4)=2644, p<0.001). People with organ failure (79%) contacted the ambulance service most frequently (χ2 (4)=584, p<0.001). Demographic factors associated with more unscheduled care were older age, social deprivation, living in own home and dying of cancer. People dying with organ failure formed the largest group in the cohort and had the highest NHS costs as a group. The cost of providing services in the community was estimated at 3.9% of total unscheduled care costs despite handling most out-of-hours calls. CONCLUSIONS: Over 90% of people used NHS unscheduled care in their last year of life. Different underlying causes of death and demographic factors impacted on initial access and subsequent pathways of care. Managing more unscheduled care episodes in the community has the potential to reduce hospital admissions and overall costs.

Trends in disease incidence and survival and their effect on mortality in Scotland: nationwide cohort study of linked hospital admission and death records 2001-2016.

OBJECTIVES: Identify causes and future trends underpinning Scottish mortality improvements and quantify the relative contributions of disease incidence and survival. DESIGN: Population-based study. SETTING: Linked secondary care and mortality records across Scotland. PARTICIPANTS: 1 967 130 individuals born between 1905 and 1965 and resident in Scotland from 2001 to 2016. MAIN OUTCOME MEASURES: Hospital admission rates and survival within 5 years postadmission for 28 diseases, stratified by sex and socioeconomic status. RESULTS: 'Influenza and pneumonia', 'Symptoms and signs involving circulatory and respiratory systems' and 'Malignant neoplasm of respiratory and intrathoracic organs' were the hospital diagnosis groupings associated with most excess deaths, being both common and linked to high postadmission mortality. Using disease trends, we modelled a mean mortality HR of 0.737 (95% CI 0.730 to 0.745) from one decade of birth to the next, equivalent to a life extension of ~3 years per decade. This improvement was 61% (30%-93%) accounted for by improved disease survival after hospitalisation (principally cancer) with the remainder accounted for by lowered hospitalisation incidence (principally heart disease and cancer). In contrast, deteriorations in infectious disease incidence and survival increased mortality by 9% (~3.3 months per decade). Disease-driven mortality improvements were slightly greater for men than women (due to greater falls in disease incidence), and generally similar across socioeconomic deciles. We project mortality improvements will continue over the next decade but slow by 21% because much progress in disease survival has already been achieved. CONCLUSION: Morbidity improvements broadly explain observed mortality improvements, with progress on prevention and treatment of heart disease and cancer contributing the most. The male-female health gaps are closing, but those between socioeconomic groups are not. Slowing improvements in morbidity may explain recent stalling in improvements of UK period life expectancies. However, these could be offset if we accelerate improvements in the diseases accounting for most deaths and counteract recent deteriorations in infectious disease.

Incidence of ischaemic heart disease and stroke among people with psychiatric disorders: retrospective cohort study.

BACKGROUND: Psychiatric disorders are associated with increased risk of ischaemic heart disease (IHD) and stroke, but it is not known whether the associations or the role of sociodemographic factors have changed over time. AIMS: To investigate the association between psychiatric disorders and IHD and stroke, by time period and sociodemographic factors. METHOD: We used Scottish population-based records from 1991 to 2015 to create retrospective cohorts with a hospital record for psychiatric disorders of interest (schizophrenia, bipolar disorder or depression) or no record of hospital admission for mental illness. We estimated incidence and relative risks of IHD and stroke in people with versus without psychiatric disorders by calendar year, age, gender and area-based deprivation level. RESULTS: In all cohorts, incidence of IHD (645 393 events) and stroke (276 073 events) decreased over time, but relative risks decreased for depression only. In 2015, at the mean age at event onset, relative risks were 2- to 2.5-fold higher in people with versus without a psychiatric disorder. Age at incidence of outcome differed by cohort, gender and socioeconomic status. Relative but not absolute risks were generally higher in women than men. Increasing deprivation conveys a greater absolute risk of IHD for people with bipolar disorder or depression. CONCLUSIONS: Despite declines in absolute rates of IHD and stroke, relative risks remain high in those with versus without psychiatric disorders. Cardiovascular disease monitoring and prevention approaches may need to be tailored by psychiatric disorder and cardiovascular outcome, and be targeted, for example, by age and deprivation level.

Trends in incidence and case fatality of acute myocardial infarction, angina and coronary revascularisation in people with and without type 2 diabetes in Scotland between 2006 and 2015.

AIMS/HYPOTHESIS: The aim of the study was to examine trends in the incidence and case fatality of acute myocardial infarction (AMI) and in hospital admissions for angina and coronary revascularisation procedures in people with type 2 diabetes and in people without diabetes in Scotland between 2006 and 2015. METHODS: In this retrospective cohort study, AMI, angina and revascularisation event data were obtained for adults from hospital admissions and death records linked to a population-based diabetes register. Incidence by diabetes status was estimated using negative binomial models with adjustment or stratification by age, sex, deprivation and calendar year. Logistic regression was used to estimate AMI case fatality by diabetes status. RESULTS: There were 129,926 incident AMI events, 41,263 angina admissions and 69,875 coronary revascularisation procedures carried out during 34.9 million person-years of follow-up. The adjusted incidence of AMI, angina and revascularisation procedures declined by 2.0% (95% CI 1.73%, 2.26%), 9.62% (95% CI 9.22%, 10.01%) and 0.35% (95% CI -0.09%, 0.79%) per year, respectively. The rate of decline did not differ materially by diabetes status. RRs of AMI for type 2 diabetes were 1.86 (95% CI 1.74, 1.98) for men and 2.32 (95% CI 2.15, 2.51) for women. Of the 77,211 people admitted to hospital with a first AMI, 7842 (10.2%) died within 30 days of admission. Case fatality was higher in people with type 2 diabetes than in people without diabetes and declined in both groups by 7.93% (95% CI 7.03%, 8.82%) per year. CONCLUSIONS/INTERPRETATION: The incidence of AMI, angina, revascularisation and AMI case fatality has declined over time, but the increased risk associated with type 2 diabetes has remained approximately constant.

Diabetes and pregnancy: national trends over a 15 year period.

AIMS/HYPOTHESIS: We aimed to examine time trends in national perinatal outcomes in pregnancies complicated by pre-existing type 1 or type 2 diabetes. METHODS: We analysed episode-level data on all obstetric inpatient delivery events (live or stillbirth) between 1 April 1998 and 31 March 2013 (n = 813,921) using the Scottish Morbidity Record (SMR02). Pregnancies to mothers with type 1 (n = 3229) and type 2 (n = 1452) diabetes were identified from the national diabetes database (Scottish Care Information-Diabetes), and perinatal outcomes were compared among women with type 1 diabetes, type 2 diabetes and those without diabetes. RESULTS: The number of pregnancies complicated by diabetes increased significantly, by 44% in type 1 diabetes and 90% in type 2 diabetes, across the 15 years examined, to rates of 1 in 210 and 1 in 504 deliveries, respectively. Compared with women without diabetes, delivery occurred 2.6 weeks earlier (type 1 diabetes 36.7 ± 2.3 weeks) and 2 weeks earlier (type 2 diabetes 37.3 ± 2.4 weeks), respectively, showing significant reductions for both type 1 (from 36.7 weeks to 36.4 weeks, p = 0.03) and type 2 (from 38.0 weeks to 37.2 weeks, p < 0.001) diabetes across the time period. The proportions of preterm delivery were markedly increased in women with diabetes (35.3% type 1 diabetes, 21.8% type 2 diabetes, 6.1% without diabetes; p < 0.0001), and these proportions increased with time for both groups (p < 0.005). Proportions of elective Caesarean sections (29.4% type 1 diabetes, 30.5% type 2 diabetes, 9.6% without diabetes) and emergency Caesarean sections (38.3% type 1 diabetes, 29.1% type 2 diabetes, 14.6% without diabetes) were greatly increased in women with diabetes and increased over time except for stable rates of emergency Caesarean section in type 1 diabetes. Gestational age-, sex- and parity-adjusted z score for birthweight (1.33 ± 1.34; p < 0.001) were higher in type 1 diabetes and increased over time from 1.22 to 1.47 (p < 0.001). Birthweight was also increased in type 2 diabetes (0.94 ± 1.34; p < 0.001) but did not alter with time. There were 65 perinatal deaths in offspring of mothers with type 1 diabetes and 39 to mothers with type 2 diabetes, representing perinatal mortality rates of 20.1 (95% CI 14.7, 24.3) and 26.9 (16.7, 32.9) per 1000 births, respectively, and rates 3.1 and 4.2 times, respectively, those observed in the non-diabetic population (p < 0.001). Stillbirth rates in type 1 and type 2 diabetes were 4.0-fold and 5.1-fold that in the non-diabetic population (p < 0.001). Perinatal mortality and stillbirth rates showed no significant fall over time despite small falls in the rates for the non-diabetic population. CONCLUSIONS/INTERPRETATION: Women with diabetes are receiving increased intervention in pregnancy (earlier delivery, increased Caesarean section rates), but despite this, higher birthweights are being recorded. Improvements in rates of stillbirth seen in the general population are not being reflected in changes in stillbirth or perinatal mortality in our population with diabetes.

A case study in distributed team science in research using electronic health records.

INTRODUCTION: Due to various regulatory barriers, it is increasingly difficult to move pseudonymised routine health data across platforms and among jurisdictions. To tackle this challenge, we summarized five approaches considered to support a scientific research project focused on the risk of the new non-vitamin K Target Specific Oral Anticoagulants (TSOACs) and collaborated between the Farr institute in Wales and Scotland. APPROACH: In Wales, routinely collected health records held in the Secure Anonymous Information Linkage (SAIL) Databank were used to identify the study cohort. In Scotland, data was extracted from national dataset resources administered by the eData Research & Innovation Service (eDRIS) and stored in the Scottish National Data Safe Haven. We adopted a federated data and multiple analysts approach, but arranged simultaneous accesses for Welsh and Scottish analysts to generate study cohorts separately by implementing the same algorithm. Our study cohort across two countries was boosted to 6,829 patients towards risk analysis. Source datasets and data types applied to generate cohorts were reviewed and compared by analysts based on both sites to ensure the consistency and harmonised output. DISCUSSION: This project used a fusion of two approaches among five considered. The approach we adopted is a simple, yet efficient and cost-effective method to ensure consistency in analysis and coherence with multiple governance systems. It has limitations and potentials of extending and scaling. It can also be considered as an initialisation of a developing infrastructure to support a distributed team science approach to research using Electronic Health Records (EHRs) across the UK and more widely.

Trends in type 2 diabetes incidence and mortality in Scotland between 2004 and 2013.

AIMS/HYPOTHESIS: The relative contribution of increasing incidence and declining mortality to increasing prevalence of type 2 diabetes in Scotland is unclear. Trends in incidence and mortality rates are described for type 2 diabetes in Scotland between 2004 and 2013 by age, sex and socioeconomic deprivation. METHODS: Data for incident and prevalent cases of type 2 diabetes were obtained from the Scottish national diabetes register with number of deaths identified from linkage to mortality records. Population size and death data for Scotland by age, sex and socioeconomic deprivation were obtained from National Records of Scotland. Age- and sex-specific incidence and mortality rates stratified by year and deciles of socioeconomic status were calculated using Poisson models. RESULTS: There were 180,290 incident cases of type 2 diabetes in Scotland between 2004 and 2013. Overall, incidence of type 2 diabetes remained stable over time and was 4.88 (95% CI 4.84, 4.90) and 3.33 (3.28, 3.32) per 1000 in men and women, respectively. However, incidence increased among young men, remained stable in young women, and declined in older men and women. Incidence rates declined in all socioeconomic groups but increased after 2008 in the most deprived groups. Standardised mortality ratios associated with diabetes, adjusted for age and socioeconomic group, were 1.38 (1.36, 1.41) in men and 1.49 (1.45, 1.52) in women, and remained constant over time. CONCLUSIONS/INTERPRETATION: Incidence of type 2 diabetes has stabilised in recent years suggesting that increasing prevalence may be primarily attributed to declining mortality. Prevention of type 2 diabetes remains important, particularly among socioeconomically deprived populations.

Cancer incidence in persons with type 1 diabetes: a five-country study of 9,000 cancers in type 1 diabetic individuals.

AIMS/HYPOTHESIS: An excess cancer incidence of 20-25% has been identified among persons with diabetes, most of whom have type 2 diabetes. We aimed to describe the association between type 1 diabetes and cancer incidence. METHODS: Persons with type 1 diabetes were identified from five nationwide diabetes registers: Australia (2000-2008), Denmark (1995-2014), Finland (1972-2012), Scotland (1995-2012) and Sweden (1987-2012). Linkage to national cancer registries provided the numbers of incident cancers in people with type 1 diabetes and in the general population. We used Poisson models with adjustment for age and date of follow up to estimate hazard ratios for total and site-specific cancers. RESULTS: A total of 9,149 cancers occurred among persons with type 1 diabetes in 3.9 million person-years. The median age at cancer diagnosis was 51.1 years (interquartile range 43.5-59.5). The hazard ratios (HRs) (95% CIs) associated with type 1 diabetes for all cancers combined were 1.01 (0.98, 1.04) among men and 1.07 (1.04, 1.10) among women. HRs were increased for cancer of the stomach (men, HR 1.23 [1.04, 1.46]; women, HR 1.78 [1.49, 2.13]), liver (men, HR 2.00 [1.67, 2.40]; women, HR 1.55 [1.14, 2.10]), pancreas (men, HR 1.53 [1.30, 1.79]; women, HR 1.25 [1.02,1.53]), endometrium (HR 1.42 [1.27, 1.58]) and kidney (men, HR 1.30 [1.12, 1.49]; women, HR 1.47 [1.23, 1.77]). Reduced HRs were found for cancer of the prostate (HR 0.56 [0.51, 0.61]) and breast (HR 0.90 [0.85, 0.94]). HRs declined with increasing diabetes duration. CONCLUSION: Type 1 diabetes was associated with differences in the risk of several common cancers; the strength of these associations varied with the duration of diabetes.