When you read the breathless reporting of the latest medical research, remember Chris Rock offers the following advice:
Ladies and gentlemen.. of the G.E.D. class of 1999 I have one piece of advice for you No matter what a stripper tells you There's no sex in the Champagne Room.. NONE! Oh there's CHAMPAGNE in the Champagne Room But you don't want champagne.. you want sex And there's NO sex.. in the Champagne Room
What's the connection?
Endpoints.
From Wikipedia "Clinical Endpoint"
The results of a clinical trial generally indicate the number of people enrolled who reached the pre-determined clinical endpoint during the study interval compared with the overall number of people who were enrolled.
For example, a clinical trial investigating the ability of a medication to prevent heart attack might use chest pain as a clinical endpoint. Any patient enrolled in the trial who develops chest pain over the course of the trial, then, would be counted as having reached that clinical endpoint. The results would ultimately reflect the fraction of patients who reached the endpoint of having developed chest pain, compared with the overall number of people enrolled.
But you don't want a medication that prevents chest pain, you want a medication that prevents heart attack! But there's no such medication in this champaign room.
Big deal? Maybe not in this example. A life without chest pain is better than the alternative. And it does seem likely that a drug that prevents chest pain could prevent heart attacks.
The problem is that many clinical endpoints: a. have zero direct impact on quality of life; and b. are connected to actual quality of life improvements by way of unproven, or even disproven theories about human biology.
A great example is blood cholesterol: no matter how hard you try, you cannot perceive your HDL or LDL score. No headaches, no euphoria, no energy, no depression, no breathlessness, no pain, nothing.
So the first thing to remember about endpoints is that what's important to researchers may not be important to you.
Case in point from The NYT. The headline says: Heart Problems Linked To Babies Born With HIV
But the study says:
The study, sponsored by the National Institutes of Health and published by the journal Circulation, found that the children had unusually high levels of cholesterol, blood sugar and blood pressure...
In other words, the study produced a string of numbers that do not have any impact at all on a child's quality of life. None of the numbers are "heart problems". They are all just... numbers. The study produced zero information about the quality or length of any person's life.
So why even write the numbers down, let alone study them?
The numbers are all "cardiac risk factors". So what? Turns out the answer is maddeningly unclear.