Thesis Thursday: Elizabeth Lemmon

On the third Thursday of every month, we speak to a recent graduate about their thesis and their studies. This month’s guest is Dr Elizabeth Lemmon who has a PhD from the University of Stirling. If you would like to suggest a candidate for an upcoming Thesis Thursday, get in touch.

Title
Essays on the provision of long term care to older adults in Scotland
Supervisors
David Bell, Alasdair Rutherford
Repository link
http://hdl.handle.net/1893/29369

What long term care provision is available to older people in Scotland?

Long term care (LTC) in Scotland comprises both formal care and unpaid care. Formal care encompasses care provided by professionals in a person’s own home as well as care in a residential care setting. Unpaid care is care that is provided by family members, friends, or neighbours. Long term care is provided to older people who need help because they are ill, frail or have a disability. It might mean help with more administrative tasks such as filling in forms, paying bills, shopping, and housework, but can also mean help with things of a more personal nature such as washing and dressing. Since 2002, individuals living in Scotland aged 65 or over are entitled to free personal care (FPC) at home, subject to a needs assessment. This makes Scotland quite different to England, where personal care costs are borne by the service user and their families, and provides a unique opportunity to conduct research.

What were the pros and cons of your chosen data sources?

I used three data sources in my PhD. Those included the Family Resources Survey (FRS), the Scottish Government’s administrative Social Care Survey (SCS) and publically available data zone level data. The key benefit of using survey data like the FRS was that they captured information about care recipients and their caregivers. I used these data in my third paper to look at unpaid carers’ Standard of Living (SoL). The down side of the FRS is that it only captures a subset of the population, which might be systematically different from the population at large. At the same time, although there is information on carers and the person they are caring for, this information is very limited for those who are not living with the care recipient. On the other hand, the benefit of using the SCS, which I used in my first two papers, is that it captures population level information about the provision of LTC services. However, unlike the FRS, the SCS was designed for administrative purposes meaning that it lacks the richness of information on client circumstances and characteristics. One solution to this is to use data zone level information as a proxy for those characteristics, but often this is not enough. Overall, the PhD highlighted both the strengths and weaknesses of working with these different data sources, pointing to the potential of using linked administrative and survey data in future research.

How did you identify sources of inequity in the provision of long term care?

Inequity in the provision of LTC exists if there are differences in LTC provision after accounting for differences in need. I investigated this issue of inequity in my first paper. In particular, we observed from the raw data that there are big differences in FPC provision between the 32 Scottish local authorities. As I mentioned, FPC is available to anyone in Scotland aged 65+ who needs it. Perhaps those differences are due to differences in need. But I didn’t find that this was the case. It seemed that, even after accounting for the need of local authority populations, via the proportion of disability benefit claims, there were still large differences in provision of FPC. I modelled this inequity using a simple regression framework. The results from the regressions found that there is evidence of geographic inequity in the provision of FPC in Scotland. In particular, the analysis suggests that the differences between the FPC rate and the rate of disability are not consistent across local authorities, suggesting that a needy individual might be more or less likely to receive care depending on where they live. One explanation for this is that local authorities differ in terms of their practices for managing the demand for FPC. However, this is an area that would require more detailed investigation with individual local authorities to understand their practices.

What is the role of unpaid care, and how did you model that?

Unpaid care is defined as care that is provided by family members, partners, or friends to those who require help because they are ill, frail, or have a disability. The care that they provide is unpaid and often considered as having a zero cost in economic evaluations. This might lead to inefficient resource allocation and poor policy decisions. In my second paper, I tried to model the effect that unpaid carers have on the FPC use of the cared for. This was difficult due to the potential reverse causality that occurs between the two. I compared different models to try to estimate this effect. Overall, my findings suggest that unpaid carers likely complement FPC services in Scotland. This relationship might be due to unpaid carers advocating on behalf of the cared for, and demanding services from the local authority for them. They might do this because they require more support to enable them to remain in the labour force. It could also be that the type of care unpaid carers provide is different to that provided by formal carers.

Why did you use a ‘standard of living’ approach and what can it tell us about the cost of unpaid care?

The motivation for using the SoL approach, as implemented by Morciano et al (2015), was really that we felt it might capture more of the trade-offs that are involved in providing care. Specifically, it is expected that unpaid carers have to divert resources in order to pay for goods and services for the person they are caring for. Compared to the conventional costing methods which have focused on attaching a monetary value to the time a carer gives up in order to provide care, we argue that the SoL approach may capture a wider array of the trade-offs that are involved in providing unpaid care. For example, are unpaid carers less able to afford to go on holiday or to take part in a regular leisure activity? If it is the case that unpaid carers have to invest resources into providing care then they might have fewer resources to devote to their own needs and wants, resulting in unpaid carers having a lower SoL compared to non-carers. The results suggest that unpaid carers who are living with the person they are caring for would require compensation of £229 per week in order for them to reach the same SoL as a non-carer.

What are the key steps necessary to identify and address unmet need in this context?

My research highlighted that there is possibly unmet need for FPC in Scotland and that this could potentially be more likely for older people who don’t have an unpaid carer helping them to access FPC services. Understanding this unmet need is a key area which requires further research. Unfortunately, it is difficult to measure and we only ever observe the met need for care, i.e. those who end up receiving formal care services. Thus, prior to addressing unmet need, it is important that we can measure it. One step necessary in doing so would be to carry out detailed investigations with individual local authorities. This would help us understand more about the needs of those individuals who apply for FPC but who are turned down. But this is only part of the picture. Understanding where individuals need FPC but don’t apply, either due to transaction costs, a lack of information on how to access those services, or other reasons, is far more difficult. One approach to gaining insight on these individuals could be to conduct qualitative interviews with them and their families.

Rachel Houten’s journal round-up for 8th July 2019

Every Monday our authors provide a round-up of some of the most recently published peer reviewed articles from the field. We don’t cover everything, or even what’s most important – just a few papers that have interested the author. Visit our Resources page for links to more journals or follow the HealthEconBot. If you’d like to write one of our weekly journal round-ups, get in touch.

Adjusting for inflation and currency changes within health economic studies. Value in Health Published 13th June 2019

The purpose of the paper is to highlight the need for transparency in the reporting of methods of currency conversions and adjustments to costs to take inflation into account, in economic evaluations. It chimes with other recent literature which is less prescriptive in terms of providing methods guidelines and more about advocating the “tell us what you did and why” approach. It reminds me of my very first science lesson in high school where we were eager to get our hands on the experiments yet the teacher (met by much eye-rolling) insisted on the importance of describing the methods of any ‘study’. With space at a premium in academic writing, I know, and I’m likely guilty of, some transparency in assumptions being culled, but papers such as this highlight their necessity.

The authors discuss which inflation measure to base the adjustments on, whether to convert local currencies to US or International dollars, three methods of adjusting for inflation, and what to do when costs from other settings are part of the analysis. With a focus on low- and middle-income countries, and using a hypothetical example, the authors demonstrate that employing three different methods of adjusting for inflation can result in a large range in the final estimates.

The authors acknowledge that it is not a one-size-fits-all approach but favour a ‘mixed approach’ where micro-costing is possible and items can be classified as tradable and non-tradable, as they say this is likely to produce the most accurate estimates. However, a study reliant on previously published costing information would need to follow an alternative approach, of which there are two others detailed in the paper.

In terms of working with data from low- and middle-income countries, I can’t say it is my forté. However, the paper summarises the pros and cons of each of their proposed approaches in a straightforward way. The authors include a table that I think would provide an excellent reference point for anyone considering the best approach for their specific set of circumstances.

An updated systematic review of studies mapping (or cross‑walking) measures of health‑related quality of life to generic preference‑based measures to generate utility value. Applied Health Economics and Health Policy [PubMed] [RePEc] Published 3rd April 2019

This is an update of a review of studies published before 2007, which found 30 studies mapping to generic preference-based measures. This latest paper cites 180 included studies with a total of 233 mapping functions reported. The majority of the mapping functions were to the EQ-5D (147 mapping functions) with the second largest group mapping to the SF-6D (45 mapping functions).

Along with an increase in volume of mapping studies since the last review, there has been a marked increase in the different types of regression methods used, which signals a greater consideration of the distribution of the underlying utility data. Reporting on how well the mapping algorithms predict utility in different sub-groups has also increased.

The authors highlight that although mapping can fill an evidence gap, the uncertainty in the estimates is greater than directly measuring health-related quality of life in prospective studies. The authors signpost to ISPOR guidelines for the reporting of mapping studies and emphasise the need to include measurements of error as well as a plot of predicted versus observed values, to enable the user to understand and incorporate the accuracy of the mapping in their economic evaluations.

As stated by the authors, the results of this review provides a useful resource in terms of a catalogue of mapping studies, however it lacks any quality assessment of the studies (also made clear by the authors), so the choice of which mapping algorithm to use is still ours, and takes some thought.  The supplementary Excel file is a great resource to aid the choice as it includes some information about the populations used in the mapping studies alongside the methods, but more studies comparing mapping functions with the same aim against each other would be welcomed.

Investigating the relationship between formal and informal care: an application using panel data for people living together. Health Economics [PubMed] Published 7th June 2019

This paper adds to the literature on informal care by considering co-resident informal care in a UK setting using data from the British Household Panel Survey (BHPS). There has been an increase in the proportion of people receiving non-state provided care in recent years in the UK, and the BHPS also enables the impact of informal care on the use of each of these types of formal care to be explored.

The authors used an instrument for informal care to try to prevent bias due to correlations with other variables such as health. The instrument used for the availability of informal care was the number of adult daughters as it was found to be the most predictive (oh dear, I’ve two sons!). The authors then estimated the impact of informal care on home help, health visitor use, GP visits, and hospital stays.

In this study, informal care was a substitute for both state and non-state home help (with the impact greater for state home help) and complimentary to health visitor use, GP visits, and hospital stays. The authors suggest this may be due to the tasks completed by these different types of service providers and how household tasks are more likely to be undertaken by informal care givers than those more medical in nature. The fact this study considers co-residential care from any household member may explain the stronger substitution effect in this study compared to previous studies looking at informal caregivers living elsewhere as it could be assumed the caregiver residing with the care recipient is more able to provide care.

I find the make-up of households and how that impacts on the need for healthcare resources really interesting, especially as it is generally considered that informal care and the work of charities bolsters the NHS. The results of this study suggest that increases in informal care could generate savings in terms of the need for home help, but an increase in formal care resource use. The reasons for the complimentary relationship between informal care and health visitor, GP, and hospital visits need further exploration.

Credits

Paul Mitchell’s journal round-up for 15th May 2017

Every Monday our authors provide a round-up of some of the most recently published peer reviewed articles from the field. We don’t cover everything, or even what’s most important – just a few papers that have interested the author. Visit our Resources page for links to more journals or follow the HealthEconBot. If you’d like to write one of our weekly journal round-ups, get in touch.

Informal care: choice or constraint. Scandinavian Journal of Caring Sciences [PubMed] Published 12th April 2017

The provision of social care in the UK has become a major economic issue, with recent increases in government spending and local authority taxation to help ease the burden on both the health and social care system in the short term. This study examines some of the issues surrounding informal carers (i.e. care of a family member), estimated to be approximately 10% of the UK population. In particular, it focuses on the role of choice and constraints involved with the decision to become a carer. Using a cross-sectional survey for a UK city, choice of caring was explored in terms of responses to care provision provided, asking if it was a free choice initially to provide care, and if there were constraints in terms of duty, lack of others or financial resources for paid care. The analysis focused on how perceived choice in the caring role was associated with socio-demographics and the type of caring role performed, as well as the role of perceived choice in caring and their wellbeing. Out of the 798 respondents to all four questions on caring choice, about 1 in 3 reported an entirely free choice in the decision, with half reporting having a free choice but also a constraint in terms of duty, other available carers or financial resources. Less than 1 in 5 reported not having a free choice. Only carers with bad health or receiving state benefits had an association with a constrained caring role. The more intense the care role was also associated with a more constrained choice. Higher levels of choice were associated with higher levels of wellbeing across measures of happiness, life satisfaction and capability. In multivariable regression analysis, it was found that having a free choice in the initial caring decision resulted in a higher impact on life satisfaction than educational qualifications and home ownership, whilst improved capability of comparable levels to that of home ownership, all else being equal. The authors thus recommend enhanced choice as a way for policy to improve carers wellbeing. Although the authors acknowledge limitations with the study design being cross-sectional and geographically limited to one city, the study shows there is plenty of scope for understanding the determinants of informal caring and consequences for those carers in much greater detail in future national surveys to help address policy in this area in the medium to longer term.

Experienced utility or decision utility for QALY calculation? Both. Public Health Ethics [PhilPapersPublished 6th May 2017

How health states should be valued in population health metrics, like QALYs and DALYs, will not be an unfamiliar topic of discussion for regular readers of this blog. Instead of arguing for decision utility (i.e. accounting for general population preferences for avoiding health states) or experienced utility (i.e. accounting for patient experiences of health states), the authors in this paper argue for a combined approach, reviving a suggestion previously put forward by Lowenstein & Ubel. The authors neatly summarise some of the issues of relying on either decision utility or experienced utility approaches alone and instead argue for better informed decision utility exercises by using deliberative democracy methods where experienced utility in health states are also presented. Unfortunately, there is little detail of how this process might actually work in practice. There are likely to be issues of what patient experiences are presented in such an exercise and how other biases that may influence decision utility responses are controlled for in such an approach. Although I am generally in favour of more deliberative approaches to elicit informed values for resource allocation, I find that this paper makes a convincing case for neither of the utility approaches to valuation, rather than both.

The value of different aspects of person-centred care: a series of discrete choice experiments in people with long-term conditions. BMJ Open [PubMed] Published 26th April 2017

The term “person-centred care” is one which is gaining some prominence in how healthcare is provided. What it means, and how important different aspects of person-centred care are, is explored in this study using discrete choice experiments (DCEs). Through focus groups and drawing from the authors’ own experience in this area, four aspects of person-centred care for self-management of chronic conditions make up the attributes in the DCE across two levels: (i) information (same information for all/personalised information); (ii) situation (little account of current situation/suggestions that fit current situation); (iii) living well (everyone wants the same from life/works with patient for what they want from life); (iv) communication (neutral professional way/friendly professional way). A cost attribute was also attached to the DCE that was given to patient groups with chronic pain and chronic lung disease. The overall findings suggest that person-centred care focused on situation and living well were valued most with personal communication style valued the least. Latent class analysis also suggested that 1 in 5 of those sampled valued personalised information the most. Those with lower earnings were likely to look to reduce the cost attribute the most. The authors conclude that the focus on communication in current clinician training on person-centred care may not be what is of most value to patients. However, I am not entirely convinced by this argument, as it could be that communication was not seen as an issue by the respondents, perhaps somewhat influenced due to the skills clinicians already have obtained in this area. Clearly, these process aspects of care are difficult to develop attributes for in DCEs, and the authors acknowledge that the wording of the “neutral” and “high” levels may have biased responses. I also found that dropping the “negative” third level for each of the attributes unconvincing. It may have proved more difficult to complete than two levels, but it would have shown in much greater depth how much value is attached to the four attributes relative to one another.

Credits