BackgroundPeople who are nearing the end of life are high users of healthcare. The cost to providers is high and the value of care is uncertain.ObjectivesTo describe the pattern, trajectory and drivers of secondary care use and cost by people in Scotland in their last year of life.MethodsRetrospective whole-population secondary care administrative data linkage study of Scottish decedents of 60 years and over between 2012 and 2017 (N=274 048).ResultsSecondary care use was high in the last year of life with a sharp rise in inpatient admissions in the last 3 months. The mean cost was £10 000. Cause of death was associated with differing patterns of healthcare use: dying of cancer was preceded by the greatest number of hospital admissions and dementia the least. Greater age was associated with lower admission rates and cost. There was higher resource use in the urban areas. No difference was observed by deprivation.ConclusionsHospitalisation near the end of life was least frequent for older people and those living rurally, although length of stay for both groups, when they were admitted, was longer. Research is required to understand if variation in hospitalisation is due to variation in the quantity or quality of end-of-life care available, varying community support, patient preferences or an inevitable consequence of disease-specific needs.

IntroductionCurrent understanding of cancer patients, their treatment pathways and outcomes relies mainly on information from clinical trials and prospective research studies representing a selected sub-set of the patient population. Whole-population analysis is necessary if we are to assess the true impact of new interventions or policy in a real-world setting. Accurate measurement of geographic variation in healthcare use and outcomes also relies on population-level data. Routine access to such data offers efficiency in research resource allocation and a basis for policy that addresses inequalities in care provision. ObjectiveAcknowledging these benefits, the objective of this project was to create a population level dataset in Scotland of patients with a diagnosis of colorectal cancer (CRC). MethodsThis paper describes the process of creating a novel, national dataset in Scotland.   ResultsIn total, thirty two separate healthcare administrative datasets have been linked to provide a comprehensive resource to investigate the management pathways and outcomes for patients with CRC in Scotland, as well as the costs of providing CRC treatment. This is the first time that chemotherapy prescribing and national audit datasets have been linked with the Scottish Cancer Registry on a national scale. ConclusionsWe describe how the acquired dataset can be used as a research resource and reflect on the data access challenges relating to its creation. Lessons learned from this process and the policy implications for future studies using administrative cancer data are highlighted.

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BackgroundApproximately thirty thousand people in Scotland are diagnosed with cancer annually, of whom a third live less than one year. The timing, nature and value of hospital-based healthcare for patients with advanced cancer are not well understood. The study's aim was to describe the timing and nature of hospital-based healthcare use and associated costs in the last year of life for patients with a cancer diagnosis. MethodsWe undertook a Scottish population-wide administrative data linkage study of hospital-based healthcare use for individuals with a cancer diagnosis, who died aged 60 and over between 2012 and 2017. Hospital admissions and length of stay (LOS), as well as the number and nature of outpatient and day case appointments were analysed. Generalised linear models were used to adjust costs for age, gender, socioeconomic deprivation status, rural-urban (RU) status and comorbidity. ResultsThe study included 85,732 decedents with a cancer diagnosis. For 64,553 (75.3%) of them, cancer was the primary cause of death. Mean age at death was 80.01 (SD 8.15) years. The mean number of inpatient stays in the last year of life was 5.88 (SD 5.68), with a mean LOS of 7 days. Admission rates rose sharply in the last month of life. One year adjusted and unadjusted costs decreased with increasing age. A higher comorbidity burden was associated with higher costs. Major cost differences were present between cancer types. ConclusionsPeople in Scotland in their last year of life with cancer are high users of secondary care. Hospitalisation accounts for a high proportion of costs, particularly in the last month of life. Further research is needed to examine triggers for hospitalisations and to identify influenceable reasons for unwarranted variation in hospital use among different cancer cohorts.

Scotland is unique in its collection of routine data for all individuals in receipt of social care services. This care encompasses home and personal care services, down to telecare and meals services. As the Scottish population continues to age and local authorities stretch shrinking budgets over an increasing number of people, there is a pressing need to understand how older people use these services to ensure they are delivered in an efficient and effective way. The availability of administrative data in Scotland provides an opportunity to explore how it might be used in a research setting to enhance this understanding. One area of interest concerns the relationship between unpaid care and formal care services. In particular, how unpaid carers might influence older peoples use of formal care services. Whether this influence is positive or negative will have important implications for the costs of care provision. The existing evidence on the impact of unpaid care on social care utilisation is extremely mixed. Scotland provides an interesting context in which to study this relationship because unlike many other jurisdictions, personal care in Scotland is provided free to all individuals aged 65+ who are assessed as needing it. This may affect the incentives faced by unpaid carers, leading to different conclusions about the relationship between unpaid and paid care, compared to previous literature. This paper uses Scotland's unique administrative Social Care Survey (SCS) for the years 2014-2016 to investigate how the presence of an unpaid carer influences personal care use by those aged 65+ in Scotland. The results suggest that unpaid care complements personal care services. Complementarity between unpaid and paid care may imply that incentivising unpaid care could increase personal care costs, and at the same time it points to the potential for unmet need of those who do not have an unpaid carer. The paper highlights some of the limitations of the administrative SCS but also demonstrates how it can be used in an effective way to enhance our understanding in an important, policy relevant area.