Several forces are contributing to an increase in the number of people living with and surviving colorectal cancer (CRC). However, due to the lack of available data, little is known about the implications of these forces. In recent years, the use of administrative data to inform research has been increasing. Administrative data is collected routinely ‘by government departments and other organisations for the purposes of registration, transaction and record keeping, usually during the delivery of a service’ (Woollard, 2014). Examples include hospital admissions data, education records and tax records.
The aim of one of our recent pieces of work was to investigate the potential contribution that this type of data could have on the health economic research of CRC. To achieve this aim, we conducted a systematic review of the health economic CRC literature published in the United Kingdom and Europe within the last decade (2009– 2019).
Our specific objectives were:
To summarise the existing health economic research of CRC in the UK and Europe;
To identify whether and what types of administrative data were used within this research;
To explore the benefits and limitations of using administrative data in this research;
To discuss the ways in which administrative data, using Scotland as an exemplar, could contribute to this research in the future
The literature search identified thirty- seven relevant studies, which we divided into economic evaluations, cost of illness studies and cost consequence analyses.
We found that the use of administrative data, including cancer registry, screening and hospital records, within the health economic research of CRC is commonplace. However, we found that this data often come from regional databases, which reduces the generalisability of results.
Further, we found that administrative data appear less able to contribute towards understanding the wider and indirect costs associated with the disease, particularly with respect to social care and indirect costs such as unpaid care.
We also found that very few papers adopted a societal perspective when carrying out their evaluation meaning that often only direct medical care costs were included.
Finally, we found that administrative data were less able to contribute when it comes to measuring patient health related quality of life (HRQoL) and preferences for those health states, which is vital particularly in EEs.
We explore several ways in which various sources of administrative data could enhance future research in this area. If you want to find out more, head on over to the European Journal of Cancer Care website where you can read the article in full.
Within the UK, a standard approach to compare the cost-effectiveness of interventions has been established by decision makers like NICE. It relies on the costs to the NHS and social care balanced against difference in QALYs.
For several reasons, this approach falls short when evaluating interventions at the End of Life.
Firstly, a significant proportion of the important costs are likely be incurred outside of the NHS, the charitable sector, the welfare state, or the individual and their families and/or carers. These currently fall outside of a NICE standard economic evaluation.
Secondly, it is inaccurate to measure patient benefit since improved function is not expected. The standard methods for quantifying health outcomes is problematic in end of life care as the patient needs/focus are different than in those expected to improve.
Thirdly, the QALY is the recommended tool for capturing health outcomes across different clinical and disease areas. However, the ability of the QALY to capture aspects of health important to patients in an end of life context has been questioned given the aim at that juncture is neither improved survival nor function. The aims are to prevent and treat symptoms, preserve function, shared decision-making and family care.
As health economics informs decision-making, influencing the quantity, quality and sustainability of health care resources, it is imperative this methodology is applied to the highest possible standards.
For more information look at the Editorial “Incompatible: End of Life Care and Health Economics” by Katharina Diernberger, Bethany Shinkins, Peter Hall, Stein Kaasa, Marie Fallon published in the BMJ Supportive and Palliative Care here.
People who are nearing the end of life are high users of hospital services. The absolute cost to providers and its value is uncertain. There is a need to identify which groups of people spend a lot of time in hospital so that care can be modified to better tailor care to patients preferences and to improve the efficiency health services in this context.
Objectives: To describe the pattern, trajectory and drivers of secondary care use and cost by people in Scotland in their last year of life. Methods: Retrospective whole-population secondary care administrative data linkage study of Scottish decedents of 60 years and over between 2012 and 2017 (N=274,048).
Results: Secondary care use was high in the last year of life with a sharp rise in inpatient admissions in the last three months. The mean cost was 10,000 pound. 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.
Hospitalisation 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.
Document the impact of COVID-19 on people who rely on long-term care (including unpaid care) and those who provide it.
Share information about policy and practice measures to mitigate the impact of COVID-19 in long-term care and gather evidence about their success or otherwise.
Analyse the long-term implications of this pandemic for long-term care policy.
The Scotland report – available here – focuses mainly on the impact of COVID-19 within Scottish Care Homes, where the impact has been particularly devastating. At the most recent release of this report (3rd June), around 47% of all COVID-19 deaths occurred in care homes. Furthermore, as shown in the figure below, more than 62% of all Scottish care homes had reported at least one outbreak of COVID-19.
The International report – available here – also focuses on care homes and care home residents, but aims to draw comparisons between countries around the world. This is incredibly difficult due to the different geographical, demographic and political contexts, which is further complicated by significant differences in the recording of data. The report highlights the key difficulties associated with mortality recording and the need to use data on all care home residents and not only those occurring within the care home.
Both reports are live documents that are being updated as new data become available. Elizabeth is also involved in a new report which is currently underway on the UK situation. This report hopes to draw useful comparisons between the four UK nations.