My quality-adjusted life year

Why did I do it?

I have evaluated lots of services and been involved in trials where I have asked people to collect EQ-5D data. During this time several people have complained to me about having to collect EQ-5D data so I thought I would have a ‘taste of my own medicine’. I measured my health-related quality of life (HRQoL) using EQ-5D-3L, EQ-5D-VAS, and EQ-5D-5L, every day for a year (N=1). I had the EQ-5D on a spreadsheet on my smartphone and prompted myself to do it at 9 p.m. every night. I set a target of never being more than three days late in doing it, which I missed twice through the year. I also recorded health-related notes for some days, for instance, 21st January said “tired, dropped a keytar on toe (very 1980s injury)”.

By doing this I wanted to illuminate issues around anchoring, ceiling effects and ideas of health and wellness. With a big increase in wearable tech and smartphone health apps this type of big data collection might become a lot more commonplace. I have not kept a diary since I was about 13 so it was an interesting way of keeping track on what was happening, with a focus on health. Starting the year I knew I had one big life event coming up: a new baby due in early March. I am generally quite healthy, a bit overweight, don’t get enough sleep. I have been called a hypochondriac by people before, typically complaining of headaches, colds and sore throats around six months of the year. I usually go running once or twice a week.

From the start I was very conscious that I felt I shouldn’t grumble too much, that EQ-5D was mainly used to measure functional health in people with disease, not in well people (and ceiling effects were a feature of the EQ-5D). I immediately felt a ‘freedom’ of the greater sensitivity of the EQ-5D-5L when compared to the 3L so I could score myself as having slight problems with the 5L, but not that they were bad enough to be ‘some problems’ on the 3L.

There were days when I felt a bit achey or tired because I had been for a run, but unless I had an actual injury I did not score myself as having problems with pain or mobility because of this; generally if I feel achey from running I think of that as a good thing as having pushed myself hard, ‘no pain no gain’. I also started doing yoga this year which made me feel great but also a bit achey sometimes. But in general I noticed that one of the main problems I had was fatigue which is not explicitly covered in the EQ-5D but was reflected sometimes as being slightly impaired on usual activities. I also thought that usual activities could be impaired if you are working and travelling a lot, as you don’t get to do any of the things you enjoy doing like hobbies or spending time with family, but this is more of a capability question whereas the EQ-5D is more functional.

How did my HRQoL compare?

I matched up my levels on the individual domains to EQ-5D-3L and 5L index scores based on UK preference scores. The final 5L value set may still change; I used the most recent published scores. I also matched my levels to a personal 5L value set which I did using this survey which uses discrete choice experiments and involves comparing a set of pairs of EQ-5D-5L health states. I found doing this fascinating and it made me think about how mutually exclusive the EQ-5D dimensions are, and whether some health states are actually implausible: for instance, is it possible to be in extreme pain but not have any impairment on usual activities?

Surprisingly, my average EQ-5D-3L index score (0.982) was higher than the population averages for my age group (for England age 35-44 it is 0.888 based on Szende et al 2014); I expected them to be lower. In fact my average index scores were higher than the average for 18-24 year olds (0.922). I thought that measuring EQ-5D more often and having more granularity would lead to lower average scores but it actually led to high average scores.

My average score from the personal 5L value set was slightly higher than the England population value set (0.983 vs 0.975). Digging into the data, the main differences were that I thought that usual activities were slightly more important, and pain slightly less important, than the general population. The 5L (England tariff) correlated more closely with the VAS than the 3L (r2 =0.746 vs. r2 =0.586) but the 5L (personal tariff) correlated most closely with the VAS (r2 =0.792). So based on my N=1 sample, this suggests that the 5L is a better predictor of overall health than the 3L, and that the personal value set has validity in predicting VAS scores.

Figure 1. My EQ-5D-3L index score [3L], EQ-5D-5L index score (England value set) [5L], EQ-5DL-5L index score (personal value set) [5LP], and visual analogue scale (VAS) score divided by 100 [VAS/100].

Reflection

I definitely regretted doing the EQ-5D every day and was glad when the year was over! I would have preferred to have done it every week but I think that would have missed a lot of subtleties in how I felt from day to day. On reflection the way I was approaching it was that the end of each day I would try to recall if I was stressed, or if anything hurt, and adjust the level on the relevant dimension. But I wonder if I was prompted at any moment during the day as to whether I was stressed, had some mobility issues, or pain, would I say I did? It makes me think about Kahneman and Riis’s ‘remembering brain’ and ‘experiencing brain’. Was my EQ-5D profile a slave to my ‘remembering brain’ rather than my ‘experiencing brain’?

One thing when my score was low for a few days was when I had a really painful abscess on my tooth. At the time I felt like the pain was unbearable so had a high pain score, but looking back I wonder if it was that bad, but I didn’t want to retrospectively change my score. Strangely, I had the flu twice in this year which gave me some health decrements, which I don’t think has ever happened to me before (I don’t think it was just ‘man flu’!).

I knew that I was going to have a baby this year but I didn’t know that I would spend 18 days in hospital, despite not being ill myself. This has led me to think a lot more about ‘caregiver effects‘ – the impact of close relatives being ill; it is unnerving spending night after night in hospital, in this case because my wife was very ill after giving birth, and then when my baby son was two months old, he got very ill (both are doing a lot better now). Being in hospital with a sick relative is a strange feeling, stressful and boring at the same time. I spent a long time staring out of the window or scrolling through Twitter. When my baby son was really ill he would not sleep and did not want to be put down, so my arms were aching after holding him all night. I was lucky that I had understanding managers in work and I was not significantly financially disadvantaged by caring for sick relatives. And glad of the NHS and not getting a huge bill when family members are discharged from hospital.

Health, wellbeing & exercise

Doing this made me think more about the difference between health and wellbeing; there might be days where I was really happy but it wasn’t reflected in my EQ-5D index score. I noticed that doing exercise always led to a higher VAS score – maybe subconsciously I was thinking exercise was increasing my ‘health stock‘. I probably used the VAS score more like an overall wellbeing score rather than just health which is not correct – but I wonder if other people do this as well, and that is why there are less pronounced ceiling effects with the VAS score.

Could trials measure EQ-5D every day?

One advantage of EQ-5D and QALYs over other health outcomes is that they should be measured over a schedule and use the area under the curve. Completing an EQ5D every day has shown me that health does vary every day, but I still think it might be impractical for trial participants to complete an EQ-5D questionnaire every day. Perhaps EQ-5D data could be combined with a simple daily VAS score, possibly out of ten rather than 100 for simplicity.

Joint worst day: 6th and 7th October: EQ-5D-3L index 0.264, EQ-5D-5L index 0.724; personal EQ-5D-5L index 0.824; VAS score 60 – ‘abscess on tooth, couldn’t sleep, face swollen’.

Joint best day: 27th January, 7th September, 11th September, 18th November, 4th December, 30th December: EQ-5D-3L index 1.00;  both EQ-5D-5L index scores 1.00; VAS score 95 – notes include ‘lovely day with family’, ‘went for a run’, ‘holiday’, ‘met up with friends’.

How important is healthcare for population health?

How important is a population’s access to healthcare as a determinant of population health? I have heard the claim that “as little as 10% of a population’s health is linked to access to healthcare”, or some variant of it, in many places. Some examples include the Health Foundation, the AHRQ, the King’s Fund, the WHO, and determinantsofhealth.org. This claim is appealing: it feels counter-intuitive and it brings to the fore questions of public health and health-related behaviour. But it’s not clear what it means.

I can think of two possible interpretations. One, 10% of the variation in population health outcomes is explained by variation in healthcare access. Or two, access to healthcare leads to a 10% change in population health outcomes compared to no access to healthcare. Both of these claims would be very hard to evaluate empirically. Within many countries, particularly the highest income countries, there is little variation in access to healthcare relative to possible levels of access across the world. Inter-country comparisons would provide a greater range of variation to compare to population outcomes. But even the most sophisticated statistical analysis will struggle to separate out the effects of other economic determinants of health.

It would also be difficult to make sense of any study that purported to estimate the effect of adding or removing healthcare beyond any within-country variation. The labour and capital resource needs of the most sophisticated hospitals are too great for the poorest settings, and it is unlikely that the wealthiest democratic countries could end up with the level of healthcare the world’s poorest face.

But what is the evidence for the claim of 10%? There are a handful of key citations, all of which were summarised at the time in a widely cited article in Health Affairs in 2014. For each of the two ways we could think about the contribution of healthcare above, we would need to look at estimates of the probability of health conditional on different levels of healthcare, Pr(health|healthcare). Each of the references for the 10% figure above in fact provides evidence for the proportion of deaths associated with ‘inadequate’ healthcare, or to put in another way, the probability of having received ‘inadequate’ care given death, Pr(healthcare|health). This is known as transposing the conditional: we have got our conditional probability the wrong way round. Even if we accept mortality rates as an acceptable proxy for population health, the two probabilities are not equal to one another.

Interpretation of this evidence is also complex. Smoking tobacco, for example, would be considered a behavioural determinant of health and deaths caused by it would be attributed to a behavioural cause rather than healthcare. But survival rates for lung cancers have improved dramatically over the last few decades due to improvements in healthcare. While it would be foolish to attribute a death in the past to a lack of access to treatments which had not been invented, contemporary lung cancer deaths in low income settings may well have been prevented by access to better healthcare. Thus using cause-of-death statistics to estimate the contributions of different factors to population health only typically picks up those deaths resulting from medical error or negligence. They are a wholly unreliable guide to the role of healthcare in determining population health.

A study published recently in The Lancet, timed to coincide with a commission on healthcare quality, adopted a different approach. The study aimed to estimate the annual number of deaths worldwide due to a lack of access to high-quality care. To do this they compared the mortality rates of conditions amenable to healthcare intervention around the world with those in the wealthiest nations. Any differences were attributed to either non-utilisation of or lack of access to high-quality care. 15.6 million ‘excess deaths’ were estimated. However, to attribute to these deaths a cause of inadequate healthcare access, one would need to conceive of a counter-factual world in which everyone was treated in the best healthcare systems. This is surely implausible in the extreme. A comparable question might be to ask how many people around the world are dying because their incomes are not as high as those of the top 10% of Americans.

On the normative question, there is little disagreement with the goal of achieving universal health coverage and improving population health. But these dramatic, eye-catching, or counter-intuitive figures do little to support achieving these ends: they can distort policy priorities and create unattainable goals and expectations. Health systems are not built overnight; an incremental approach is needed to ensure sustainability and affordability. Evidence to support this is where great strides are being made both methodologically and empirically, but it is not nearly as exciting as claiming healthcare isn’t very important or that millions of people are dying every year due to poor healthcare access. Healthcare systems are an integral and important part of overall population health; assigning a number to this importance is not.

Picture credit: pixabay

Health economics and behaviour change: a workshop

Authors of a paper entitled What can health psychologists learn from health economics: from monetary incentives to policy programmes note that they

…believe that health psychologists would benefit from greater familiarisation with the methodologies, theories, and tools of economics”.

I wonder what discourse a research paper examining what health economists could learn from health psychologists or health behaviour change would take; particularly in the area of intervention design and evaluation. Intervention design and evaluation is an area in which multidisciplinary research has become the name of the game! Over the last decade, the intersection of economics and psychology has become even more apparent. The announcement of the 2017 Nobel Memorial Prize for economics, to Richard Thaler, for his groundbreaking work incorporating psychology into economic theory, was a victory not only for the Professor but also for behaviourally-informed policy worldwide.

A workshop

As the Intensive Follow-Up Workshop on Designing Effective Interventions for Health Behaviour Change approaches, I reflect back on the introductory workshop that I attended at the Health Behaviour Change Research Group (HBCRG), NUI Galway. The aim of that workshop was for participants to learn about, and practice using, emerging methods for designing and evaluating behavioural interventions. It was delivered by Dr Molly Byrne, Dr Jenny McSharry and Milou Fredrix.

My background is in health economics. I currently work in a large multidisciplinary team (we call ourselves the CHErIsH team!); a melting pot of health behaviour change, health psychology, public health, health economics and general practice. The different elements of our disciplines are “melting together” into a harmonious common goal of developing an intervention for childhood obesity prevention. I am extremely fortunate to have learnt a lot working with this team. I have been exposed to different methodologies, theories and frameworks in behaviour change and health psychology which has greatly enriched my health economics research thinking. Prior to becoming part of the CHErIsH team, I had little to no experience of working in behaviour change or health psychology. Admittedly throughout my PhD, my thoughts on health behaviour change and psychology models and frameworks wandered from imagining them to be very complex with almost an overload of frameworks and theories – to the other extreme of thinking this area to be a fairly unassuming area of research and that behaviour change could be easily evaluated.

It is safe to say that I left the introductory workshop with the confirmation that behaviour change is a complex area, but that this complexity is OK! The workshop fuelled me with a wealth of knowledge, reassurance and confidence regarding how I might apply behaviour change theoretical models to inform my health economics research. I also left the workshop with a greater understanding of the emerging methods for evaluating behaviour change interventions (which coincidentally I will be doing very shortly).

Whilst this blog post does not cover all of the material outlined in the workshop, below are some nuggets of information that I took home with me.

The big picture

What we do in our behaviours are hugely predictive of morbidity and mortality. Justify the importance of health behaviour in the particular setting that you are researching. This is important in health economic evaluations when we think of health outcomes and how behaviour might impact on these. Or indeed within the less traditional methodologies in health economics such as discrete choice experiments examining individual preferences and behaviour.

When designing a behavioural intervention…

  1. Identify and define the specific behaviour that you are trying to change, this is as good as having a good research question or a good systematic review question. Be aware of the spillover effects that the intervention might have, along with thinking how this intervention might be measured. The more precisely you specify the behaviour, the better!
  2. Understand the psychological theory – why a particular person or group is behaving a certain way in a particular setting. Understand how you can change it.
  3. Specify clearly what the intervention is in your research paper, describe it – clearly. There is a greater need for specificity. There is loose terminology in behaviour change, which often has more complex interventions than biomedical subjects. There is a real need for common language, but try to be clear when describing your intervention. Don’t make it hard on those trying to evaluate it later.

Take home messages

Behaviour change is complex. But, complexity is not a problem once we are aware and acknowledge the complexity that exists.

I previously mentioned that I left the workshop reassured. I was reassured to be reminded by the experts that it is OK not to know exactly what your intervention is going to be or going to look like from the onset.

Last, but by no means least, this workshop provided me with access to the psychological and health behaviour change frameworks. There are in fact 83 theories! Molly and Jenny spoke about “on the ground reality”. So whilst theoretically there are all of these theories, pragmatically the intervention needs to be designed and tested. So a pilot should be about optimising the components of the intervention and testing which components are more feasible.