Financial Outcome Measure

I think a financial outcome measure will be important for getting governmental funding support for bigger trials and making a case for future treatment subsidies. So it should be considered an outcome measure of improvement.

There are several factors, these are 3 that spring to mind:
- Increasing working hours potential.
- Decreasing cost of medications/supplements.
- Decreasing hours of care required (either paid or family that limit their working hours potential).

Has anyone come across something that covers this well? Any ideas on questions to ask or how to time these surveys (month before treatment and several months after)? How quickly might financial impact change with improved severity?

 

Yep exactly. When I was bedbound, but still able to tolerate talking and light and such, I had care credits to have people help me with cleaning, I also had a mental health nurse I got to speak too once a week etc.

Now I have absolutely nothing, not even communication with a doctor, because I can’t tolerate any of it.

 

Right, for some the improvement might be enough to consider increasing employment. For most, we're likely looking at reduced assistance costs and perhaps other medication and supplement costs.

I think these are all signs of improvement, just wanting to know how to best capture it with questions.

 

Amazing post. Thank you very much for all this information.

I think you highlight that it could work at the mild end where people can increase employment and it could work at the severe end where people require reduced care. But the middle moderate part is unlikely to alter in financial output/input with improvement.

I think the tricky part might be the acquisition of new employment, that potential for work as you highlight might be a false dawn.

Also, a year timeline wouldn't fit. Needs to be in a 3-4 month time frame at most I'd suspect.

 

I agree it's potentially a useful hook to attract attention to a project, but as others have said, returning to work is the most challenging step for people who've regained some of their function. Unless you're fully recovered it's impossible to gauge how much work you could do until you try it (even when you're returning to a job you've done for years it's always harder than you thought!), let alone get a sense of whether a particular job will be sustainable.

But it is important, so maybe it could feature as one of the measures of improvement? Presumably, things such as taking a more active part in family life, resuming social activities and hobbies, and resuming or beginning a course of study will also be on the list. Outcomes like these could be presented as a scale with the most modest gains at the bottom and the most challenging at the top; it might help underline to potential funders that returning to work means climbing a ladder, not a doorstep. If a treatment helped and follow-up could be maintained for at least a year (two would be better), you might be able to show that some participants gained another rung or two during the period.

I don't know whether that's a useful approach, but it might be—policy makers know there's more to it than whether or not someone is working within a year. For someone who's been a long way from work returning almost always takes time, and even if they're not fit enough for work post-treatment, the ability to resume social activities or begin learning are still economic benefits. It can mean they're less likely to be dependent on services, and if they did eventually improve, they'd be in much better shape to move towards work.

If you're looking at it from the point of view of economic benefits to society as well as to the individual, people who're able to return to work may also:

• be contributing income tax;
• not be claiming social security;
• be saving for a pension, reducing their dependence on social security top-ups after retirement;
• be able to afford to buy a property or rent privately, reducing demand on social housing;
• have private or employer-provided health insurance and rely less on public healthcare;
• be able to look after their long-term health, reducing morbidity in later life;
• have more money available for discretionary spending in the economy.

I guess it depends on whose PoV you're looking at it from (societal or individual), the extent of the gains, and how well a chronically ill person is currently supported financially.

For some pwME, the individual financial impact is more likely to be negative than positive. Personal care is often the largest item in the budget, but if they weren't paying for it in the first place, there's no saving. People who're able to do more after treatment are likely to grab the chance with both hands, and some of those things will cost money they didn't need to spend when they were stuck in the house 24/7.

For someone who's been out of work a long time, returning to a job often has a negative financial impact for a year or more. Some of the issues:

• they may have no savings to set themselves up for work and little or no access to credit;
• their social security is stopped immediately, but they don't get a salary payment for at least four weeks;
• they have to find the money for a month's travel with no income to cover it;
• they might also have debt they need to service during this time;
• their wardrobe isn't geared up to working, and for some jobs they'll face a substantial outlay on clothes and shoes;
• for the first 12 to 24 months, these return-to-work costs, together with the normal additional costs of working, may mean they're worse off—or at least no better off—than when they weren't working.

(As you might be able to tell, I've been there, bought the t-shirt, grown out of it, and sold it as vintage on eBay. )

 

For someone like me, my earning power is very much linked to how well I feel. I have very short-term projects that I can complete on a day I feel well. If I'm in a good period I can make good money. At other times weeks go by with no earnings.So my health shows up in my bank account.

But that tight sensitivity of health to earnings requires being a freelancer with short-run projects, most jobs are not freelance and even most freelancers work on longer time-scale things.

If I was truly well I'd probably get an office job for the proper job security and better promotion prospects. But even if I was cured tomorrow could I start that sort of job within 3-4 months? I don't think I'd even be ready to trust my own health for a few months.

For your purposes, Chris, I think you probably need to do some dumb extrapolation, say that if this person gains 20 hours a week of feeling well, they gain say 10 hours of work potential, and multiply that through at an average or median or minimum wage. I wouldn't feel bad about that methodology, some very high-powered consultancies are making economic estimates like this and charging themselves out for thousands of dollars an hour!!

As for other measures:

How many tablets I take each day may also be a good signal of how I feel. Sometimes I whittle the supplement stack down and that's often because I'm in a good period. Then I crash and decide whatever cost and risk there is in taking 20 tablets a day is worth it if I can gain 5% more function.

I've thought often of non-coventional health markers. Steps, sleep, earnings are all interesting. Another one I think correlates with feeling worse, for a mild person like me, is scrolling these forums. When I'm feeling a bit better I think about being sick a lot less and don't care nearly so much what the latest papers say! If I log off for 6 months it's probably because I'm in a mild patch.

Yet another measure might be to run complexity/sentiment analysis on the text I write while I am logged on. On bad days the writing level will be lower and the positive sentiment will be rarer!

 

To be honest, I think it would be a disastrous mistake, at best a distraction and at worst, much worse. Remember that this is how the PACE people got their bandwagon going. It leads to the expectation 'you had the treatment, now get a job'.

The irony is that healthcare doesn't actually work like this. When I entered rheumatology we cost nothing because we used some old drugs that cost a few cents a month. Rheumatology was considered a backwater speciality that nobody really needed. Suddenly in the 1990s we discovered the use of biologics. Rheumatology shot up to the highest share of the drug budget. We became big tie expensive. And from that point on rheumatology has been a major player. Nobody has taken any interest in whether or not people have gone back to work, and rightly so, because it is only indirectly and inconsistently related to the objective - health.

Rehab services are always popular and are sold as getting people back to work. But the reason they are popular is that they get the patients off the GP's backs and on to someone else's responsibility - a physio or a psychologist who is happy to be paid a pittance.

The finance of healthcare is all a mess and a very quick route to maltreating patients.

Going back to work is a reasonable surrogate for major improvement and it might be useful as an outcome measure but we have never ever even considered using it in rheumatology. We got the billions of dollars for the treatments and nobody asked about employment. As part of a primary outcome measure to base efficacy analysis on it would be weak. We want trials to be funded on the basis of reliable assessment of efficacy, not a political motive that may do patients harm.

I sit on grant advisory boards and I wouldn't take any notice of any financial assessment for a project. Just whether it might reliably show a health benefit.

 

Double-blinded

 

So would have to capture potential to work, not actual process of being employed.

 

Excellent post. Thank you. This will help me a lot.

I think develop I financial survey will have to be very well-considered. May only strategically bring it out in those already employed part-time or the severe with carer help. Certain demographics. Don't want to undersell the life improvements on a financial scale, just simply thinking ahead to getting medications in to a universal health care system.

 

It's hard to capture a one-size fits all survey I think. I think any development of this type of outcome measure is going to need interviewing hundreds of patients to capture the diversity and determine value.