Treatment Scores Tutorial 6: Creating the Calculator (Spina Bifida)

There are several steps to creating a Treatment Score. First, you need to create a diagnosis. Second, you need to create a treatment list. Third, you need to create a Treatment Score Calculator™ for each treatment. Three previous tutorials can be found here:

The Treatment Score Calculator™ is the "heart and soul" of science-based medicine, evidence-based medicine, shared decision-making, and informed consent.

At first, some people cannot think outside the box enough to understand the Treatment Score Calculator™. Most people can only understand the same old thing they have done for years and years. What people have done in the past is write essays instead of digesting a treatment down to its “net treatment benefit” = the Treatment Score.

You are diagnosed with deadly cancer. You are given a list of Western medical treatments that you can undergo such as: surgery, chemotherapy, radiation, cryotherapy, and immune therapy. You also discover a bunch of alternative medical treatments from the Internet. What would you rather have, a list of all these treatments with their Treatment Scores, or 500 medical studies and Internet articles to read? With Treatment Scores you will understand all the treatments within seconds. Doing things the old way could take you months to years. You could be dead before you actually understand the treatment options!

The concept of the “net treatment benefit for the patient,” which we call the “Treatment Score,” is so new to many people I have been explaining it in terms of gross income and net income.

When you’re trying to figure out your financial health, first you figure out your gross income, and then you figure out your net income.

Imagine a greatly oversimplified situation like this:

Gross Income Expenses
$100,000 $10,000 medical
$10,000 education
$10,000 insurance
$10,000 taxes
$10,000 maintenance

Net Income

First you figure out your gross income, and then you subtract all your expenses to get your net income. That’s how you figure out your financial health. Figuring out the Treatment Score is very similar. First, you figure out the gross treatment benefit and then you figure out the net treatment benefit. In other words, we want to get from the “gross treatment benefit” down to the “net treatment benefit,” which equals the Treatment Score.

What confuses people are the many different scales for the gross treatment benefit, and the fact that you can have “side effects” from treatments that are negative, but you can also have “side benefits” from treatments that are positive.

How do you determine the scale for the “gross treatment benefit?” The scale you start with is the outcome that is most important to the patient! The scale could be “overall survival” if we are dealing with cancer. The scale could be “resolution of symptoms” if we are dealing with the common cold, pneumonia, autism, incontinence, or some other diagnosis. This is an area of empowerment for patients. Patients need to be involved in setting the scale for the gross treatment benefit. Patients are often astonished to learn that the “outcome scales” used in medical papers are not the “scales” that are important to them!

Farther down in this essay I am going to use the scale of “resolution of urinary incontinence.” But before I get to that, I want to point out to you the problem we have in healthcare with figuring out the “net treatment benefit.” Here is the general formula for figuring out the net treatment benefit:

  • net treatment benefit = gross treatment benefit - side effects + side benefits

Remember, how this is similar to your financial health:

  • net income = gross income – expenses

So what’s the big problem? The big problem is that while your gross income is in dollars, and all your expenses are in dollars, it’s not nearly so simple for the net treatment benefit. The gross treatment benefit is in one currency (dollars), all the side effects are in other currencies, and all the side benefits are in other currencies. This means that we are going to need conversion factors to figure out the net treatment benefit. Let’s redo our formula for the net treatment benefit using common currencies such as the US dollar, European euro, and British pound.

  • Net treatment benefit (US dollars) = gross treatment benefit (US dollars) – side effects (European euros) + side benefits (British pounds)

You can see that the net treatment benefit has become complicated. We want our outcome in US dollars. However, we must also work with European euros and British pounds.

It’s even more complicated than that. When dealing with the net treatment benefit we want in US dollars, we actually have to deal with an unlimited number of different currencies. All the negative side effects and positive side benefits of treatments are in different currencies. We essentially have to deal with an infinite number of currencies when calculating the net treatment benefit (although for any one diagnosis there is a limited number of side effects and side benefits, so it can be done)!

I recently reviewed a treatment for urinary incontinence in patients suffering from spina bifida. I wanted to figure out the net treatment benefit for an operation that has come to be called the Xiao procedure, named after the physician who invented it.

To figure out the Treatment Score, which is the net treatment benefit, I needed to collect several statistics. The main statistic I was interested in was urinary incontinence. This main outcome measure can also be thought of as the gross treatment benefit. This statistic goes in the top left of the Treatment Score Calculator™. Interestingly, I discovered that patients who underwent the Xiao procedure were no better off than those who did not when it came to the main outcome measure. They were 0% better.

Next, on the right I collected statistics for the positive side benefits, and I collected statistics for the negative side effects. The green bar indicates positive items and the red bar indicates negative items.

When I figured out that the main statistic was 0%, I thought perhaps I was done. For the purposes of demonstrating the concept of Treatment Scores, I thought perhaps a Treatment Score = 0 was good enough. But the Xiao procedure kept bothering me. If you really took the time to add up every positive side benefit and negative side effect would the Xiao procedure Treatment Score continue to be zero?

It’s time to better explain the statistics in the Treatment Score Calculator™. These statistics are pulled from the medical literature. When you click on the statistics, within the programming itself, it takes you to another page where it is completely transparent where the statistics come from and how they are compiled. This kind of transparency that we are providing for Treatment Scores is essential for science-based medicine. The statistics that go in the Treatment Score Calculator™ are the “hardest” numbers that we can obtain. Eventually, the entire process of obtaining the numbers will be transparent, peer-reviewed, and as objective as possible. They will also be continuously reviewed by software algorithms.

When I reviewed the numbers this time, I decided that I was going to have to use a another feature of the Treatment Score Calculator™, which allows us to decide how certain we are of the numbers based on the quality of the studies.

This time I was laser focused on fecal incontinence. If even 1% of the patients became continent of their feces, that would be a major life improvement. I had issues with the numbers because the software was rounding numbers up or down, instead of being as precise as I wanted it to be. This is something we can fix down the line. But also the numbers within the studies were somewhat subject to interpretation and uncertainty. So I emailed authors of two of the studies. This turned out to be a great help (and I thank them).

Doing this quality review caused me to revise many of the numbers. The Treatment Score calculator now looks like this:

Notice that all the potential positive side benefits have been reduced to zero. It turns out that the quality of the studies that suggested these positive side benefits were present is very low. This reduced my statistical certainty of these positive side benefits to zero. That takes care of the positive side benefits, and now we need to move on to the negative side effects.

Next, I did the same thing when reviewing the numbers for the potential negative side effects. Many of these numbers dropped to zero because the quality of the studies done was so low that their statistical certainty rounded to zero. One negative side effect, “bed rest x 3.5 days required” was dropped completely, because it was from an uncontrolled study, and detethering surgery with or without the Xiao procedure requires bed rest afterwards.

Two negative side effects remained: 100% of the time the total operation time increased when the Xiao procedure was added to the detethering operation, in fact, the Xiao procedure added about 90 more minutes of operating time. And, in 50% of the patients who got the Xiao procedure, there was a wound infection.

The two negative side effects on the right need to be subtracted from the scale of “incontinence of urine resolved” on the left.

But everything on the right has to be weighted. Where do we get the conversion factors we need? Sometimes they exist in the medical literature. Sometimes, they exist as “quality adjusted life years” or “disability adjusted life years.” Sometimes you can find a “disability weight” for a side effect. However, the overwhelming majority of the conversion factors we need do not exist. I would hazard a guess that 99.9% of the conversion factors we need do not exist. This means that most of the time we have to figure them out as mathematically and logically as we can ourselves. We also have to make our conversion factors transparent so that others can critique them and improve upon them. This becomes part of shared decision-making with the patient.

In this situation, the Xiao procedure adds an average of 90 minutes of operating time to the overall operation. This is a negative, but how much of a negative in the overall scheme of things? This negative is very near to zero. If the operation worked and incontinence was restored for a lifetime, that 90 minutes would not be very important. That 90 minutes would literally be a tiny blip out of the next 10, 20, or 30 years.

Even in this situation, where the operation did not work, that 90 minutes does not change the outcome very much over the course of a lifetime either. It’s basically 90 minutes lost from the patient’s entire lifespan. Although, it is important to note that patients with spina bifida have a decreased average lifespan than patients without spina bifida.

We still have to convert the 50% event rate of wound infection in the Xiao procedure patients as a negative onto the main scale of resolution of urinary incontinence. We need to subtract it from the Treatment Score of zero, which is where we now stand.

According to the study from which the 50% rate of wound infection comes, the patients required oral antibiotics only, and no patients required a surgical revision of the wound. If incontinence were restored to the patients this would be a relatively small price to pay. In the setting of incontinence not being restored in the patients, the wound infections are more troubling, but they are a short term negative, not a long term negative unless there are permanent complications from the antibiotics.

The typical course of oral antibiotics is seven days, 10 days, or 14 days. I looked at the medical literature on wound infections after appendectomies, wound infections after hip surgeries, and in other situations focusing on quality adjusted life years and disability adjusted life years to try to gain perspective.

I did find one hard number to use in my calculations. The disability weight for urinary incontinence is 0.142 according to a World Health Organization paper.

I could not however find the disability weight for a postoperative wound infection. I wrote the World Health Organization to see if they could give me a disability weight for a post-operative would infection that requires only oral antibiotics for resolution. (I did not hear back from WHO as of this writing.)

In the meantime, I developed a disability weight myself. After reading many of the World Health Organization documents, I decided that the disability weight for postoperative wound infection that resolves with oral antibiotics is low and close to zero when compared to the scale of “resolution of incontinence” for the rest of one’s life. This negative side effect now rounds to zero.

The bottom line is that the Treatment Score for the Xiao procedure = 0.

To be extremely precise with the estimation, the Treatment Score for the Xiao procedure = -0.001.

That’s a negative 0.001.

The Treatment Score being negative is important. The Treatment Score scale goes from 0% to 100%. We use a didecile (20 points) to establish each Treatment Grade like this:

  • Grade A = 81 to 100%
  • Great B = 61 to 80%
  • Great C = 41 to 60%
  • Grade D = 21 to 40%
  • Grade E = 1 to 20%
  • Grade 0 = 0%
  • Grade F = any Treatment Score that is negative.

For the Xiao procedure, the Treatment Grade goes from Treatment Grade = 0 to treatment grade = F. Obviously in medicine we want all Grade A treatments. We don’t want any Grade 0 or Grade F treatments.

In reality, the world is full of grade C, grade D, and grade E treatments. The lower grades of treatments make up the vast majority of all treatments in use today.

Treatment Scores are in their infancy. The concept is just beginning to gain traction. Like most things in medicine, they may take a long time to catch on in less you help. Treatment Scores will also keep getting better and better over time as we move into the future. You can lead the healthcare revolution. You can lead the movement for treatment transparency. All you have to do is ask, “What’s the Treatment Score for that?”

Recently a prominent physician: James Madera, MD, suggested in an article that most of the modern healthcare digital products and medical devices are nothing more than “snake oil.”
(Source: James Madara, MD, as quoted in “AMA CEO calls digital products modern-day ‘snake oil’” By Greg Slabodkin. Health data management. June 13 2016. Accessed June 20, 2016.)

I share Dr. Madera’s frustration. Ask yourself, what has big data done for you? What has health information technology done for you?

Treatment Scores are the exception to the snake oil. Treatment Scores can use big data and health information technology to help everyone around the world right now. Treatment Scores are the treatment transparency product that everyone around the world needs.

The reason is simple; everyone needs treatment transparency. Your health and your life are at stake. We have problems with over-treatment, under-treatment, mistreatment, and lack of transparency. Treatment Scores are the tool that can actually deliver personalized medicine, science-based medicine, evidence-based medicine, shared decision-making, and informed consent.

Recently I called a breast-cancer nonprofit, because someone I know is suffering from highly aggressive metastatic breast cancer. I talked to their patient advocate/counselor and got absolutely nowhere. The person I talked to had no idea about the science of medicine behind the available treatment options. I could not blame this person whatsoever. Studies show that doctors don’t understand medical treatments. Therefore, how can nonprofit organizations understand medical treatments? We have to change this!

Nonprofits are in a very difficult situation. Usually, they are financially strapped. Often they know the research that needs to be done, but they cannot raise enough money to do research themselves.

However, there is something nonprofit organizations can do right now. Nonprofit organizations that are advocating for a disease can do Treatment Scores at with their medical advisory board. The Treatment Scores can be published in a transparent way, so that everyone in the world can peer review the Treatment Scores. This will be educational and highly informative. We can make sure that the science is as objective and unbiased as possible.

For any diagnosis, there are a limited number of high-quality studies. Within those high-quality studies there are a limited number of important statistics. Nonprofit organizations can now collect this information at, and can make this information transparent to all their patients.

The world is about to change for the better. Treatment Scores are coming. Treatment transparency is a train that cannot be stopped. The good that a small disease-related non-profit organization can do is about to increase dramatically.

It will soon become the duty of every nonprofit healthcare organization to create diagnoses, to create treatment lists, and to create Treatment Scores for each and every treatment.

Nonprofits can do the most important thing for their patients; they can provide treatment transparency.

By using Treatment Scores, personalized medicine, treatment transparency, shared decision-making, science-based medicine, peer review, evidence-based medicine, and informed consent can all work together for the benefit of patients everywhere.

Source of the Randomized Controlled Trial:
Tuite GF, Polsky EG, Homsy Y, Reilly MA, Carey CM, Parrish Winesett S, Rodriguez LF, Storrs BB, Gaskill SJ, Tetreault LL, Martinez DG,Amankwah EK. “Lack of efficacy of an intradural somatic-to-autonomic nerve anastomosis (Xiao procedure) for bladder control in children with myelomeningocele and lipomyelomeningocele: results of a prospective, randomized, double-blind study.” J Neurosurg Pediatr. 2016 May 3:1-14.
DOI: 10.3171/2015.10.PEDS15271

Additional Sources:
Xiao CG1, Du MX, Li B, Liu Z, Chen M, Chen ZH, Cheng P, Xue XN, Shapiro E, Lepor H. "An artificial somatic-autonomic reflex pathway procedure for bladder control in children with spina bifida." J Urol. 2005 Jun;173(6):2112-6.

“Response: Some lessons learned from negative results of a randomized controlled trial for bladder reinnervation with the Xiao procedure.” Tuite GF, Polsky EG, Homsy Y, Reilly MA, Carey CM, Parrish Winesett S, Rodriguez LF, Storrs BB, Gaskill SJ, Tetreault LL, Martinez DG, Amankwah EK. J Neurosurg Pediatr. 2016 May 3:1-2.

[An electrophysiological study on the artificial somato-autonomic pathway for inducing voiding]. Liu Z, Liu CJ, Hu XW, Du MX, Xiao CG. Zhonghua Yi Xue Za Zhi. 2005 May 25;85(19):1315-8.

“Electrophysiological monitoring and identification of neural roots during somatic-autonomic reflex pathway procedure for neurogenic bladder.” Dai CF1, Xiao CG. Chin J Traumatol. 2005 Apr;8(2):74-6.

“An artificial somatic-central nervous system-autonomic reflex pathway for controllable micturition after spinal cord injury: preliminary results in 15 patients.” Xiao CG1, Du MX, Dai C, Li B, Nitti VW, de Groat WC. J Urol. 2003 Oct;170(4 Pt 1):1237-41.

"Skin-CNS-bladder" reflex pathway for micturition after spinal cord injury and its underlying mechanisms. Xiao CG1, de Groat WC, Godec CJ, Dai C, Xiao Q. J Urol. 1999 Sep;162(3 Pt 1):936-42.

“Xiao Procedure for Neurogenic Bladder in Spinal Cord Injury and Spina Bifida.” Neurogenic Bladder (F Daneshgari, Section Editor). Chuan-Guo Xiao. Current Bladder Dysfunction Reports. June 2012, Volume 7, Issue 2, pp 83-87. First online: 01 April 2012.

“US Pilot Study of Lumbar to Sacral Nerve Rerouting to Restore Voiding and Bowel Function in Spina Bifida: 3-Year Experience.” Kenneth M. Peters, Holly Gilmer, Kevin Feber, Benjamin J. Girdler, William Nantau, Gary Trock, Kim A. Killinger, and Judith A. Boura1. Advances in Urology. Volume 2014 (2014). Article ID 863209, 7 pages.

“Outcomes of lumbar to sacral nerve rerouting for spina bifida.” Peters KM, Girdler B, Turzewski C, Trock G, Feber K, Nantau W, Bush B, Gonzalez J, Kass E, de Benito J, Diokno A. J Urol. 2010 Aug;184(2):702-7. doi: 10.1016/j.juro.2010.03.058. Epub 2010 Jun 19.

“The artificial somato-autonomic reflex arch does not improve lower urinary tract function in patients with spinal cord lesions.” Rasmussen MM, Rawashdeh YF, Clemmensen D, Tankisi H, Fuglsang-Frederiksen A, Krogh K, Christensen P. J Urol. 2015 Feb;193(2):598-604.

“Double-blinded randomized controlled trial of the Xiao procedure in children.”

“Double-blinded randomized controlled trial of the Xiao procedure in children.”

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