A question for Lyme disease patients
If you had the choice, would you rather
A. Live for 30 more years with the Lyme disease symptoms you have now?
B. Live for just 5 more years, but in perfect health?
Read on to find out why researchers have to ask people questions like this.
Health economics can have some very difficult questions, like the one above, to try to answer. How do you include the implications of living in chronic pain in a financial calcuation? How do you place a monetary value on being deaf?
This blog post explains some of the methods that the NHS uses, and discusses how they might be relevant to Lyme disease patients.
What price does the NHS put on a patient spending part of their working life disabled?
This is a complex question in part because most of the cost of someone remaining too ill to work is borne not by the NHS, but by that person and by the state. So when the NHS works out its OWN costs, they are only looking at part of the whole effect.
This does not mean they think it is unimportant, but it does mean they do not have the raw data to enable them to make the full calculation.
How does the NHS give financial consideration to a person’s physical and mental suffering?
The NHS uses a calculation called “Quality-adjusted life years” (or QALYs) which is explained here:
WIKIPEDIA: Quality adjusted life year
One year lived in perfect health is worth 1 QALY. Being dead is worth 0 QALYs. A year spent suffering from most medical conditions would be considered worth less than 1 QALY, and would be given a numeric value between 0 and 1.
For example, imagine a treatment for a disease could make patients life an extra 10 years on average, but for that time they would be doubly incontinent; after surveying a large number of members of the general public, you might find that the average person thought 2 years living like this would be worth 1 year living without incontinence. Therefore, a quality adjusted life year in this condition would be half of a healthy year. Your QALY rating would be 0.5.
There are some conditions regarded as being worse than death, and a year living in that condition would be attributed a QALY that would be a negative number.
How are QALYs used to evaluate treatments?
The NHS health economists then use research on treatment (or other interventions) to find an appropriate monetary value for these QALY points.What is the cost of 1 QALY if we use treatment A? What is the cost of 1 QALY if we use treatment B instead? How many QALYs will a person have if we can offer no treatment at all?
They use this value when calculating what is the more cost-effective prevention for a problem (such as smoking) or treatment for a medical condition, as explained here:
NHS: Judging the cost effectiveness of public health activities
The NICE guideline researchers for the Lyme disease guideline found insufficient research evidence to guide this calculation on Lyme disease.
For example, you cannot calculate the QALYs you could add to a Lyme disease patient’s life with a certain antibiotic treatment, if you are relying on a research paper which only tells you what percentage of patients’ EM rashes went away.
This is one of the reasons that a Core Outcome Set for Lyme disease is needed, so that future researchers can be guided to interview patients systematically on all their symptoms before and after treatment, and at intervals over the very long term, and include data on all details of their quality of life, level of disability and so on.
This would be one of the indispensable pieces of input data to let us calculate the true cost of leaving Lyme disease patients untreated.
What quality of life evidence do we have on Lyme disease so far?
The online survey that this charity ran in 2016 asked the question “How has your quality of life changed as a result of having Lyme disease?”
We received text answers from 500 respondents which described the devastating impact on their lives. We found that about 75% of the 500 people who responded were too ill to work at all.
However, the respondents were recruited online and the answers were just patient testimony. That means the selection of respondents was probably skewed towards the chronically ill people rather than being a balanced sample of all Lyme disease patients. It also means that their answers cannot be independently verified.
The methodology I have outlined above would be part of what is needed to do this research in a scientifically accurate way.
Back to the original question
Have you thought about your answer to the question at the start of this post?
If you were offered a treatment that would cure your Lyme disease symptoms, allow you to live pain free and get back to full time work, but shorten your life; how many ill years of your life would you give up to have a smaller number of healthy ones in exchange?
If 5 healthy years would not be enough for you, what about 10? What about 15?
For everyone, there will be a number of healthy years that they think is worth having in exchange for 30 years with Lyme disease.
What would yours be?
The Caudwell LymeCo Research Fund raises money for research to help answer this and many more questions about Lyme disease.
Can you help? Every little makes a difference.