When patients undergo medical treatment — like radiation therapy for prostate cancer, for instance — little is reported about the lifelong side effects that can arise.
That’s because outcomes have disproportionally focused on survival. Whether a patient has incontinence, impotent, or blood in the urine stemming from prostate cancer therapy has largely been overshadowed.
In a recent New York Times’ column, Pauline Chen highlights the Patient-Centered Outcomes Research Institute. According to health policy analysts,
the potential of such an enterprise will be fully realized only if the institute supports initiatives and strategies that place the patient experience not only front and center in research but also smack in the middle of the medical mainstream.
Obtaining patient experiences after treatment is important. Quality of life sometimes can be just as, if not more, important than survival itself.
This segues into the recent findings from an NIH trial showing a lung cancer mortality benefit from annual screening chest CT scans. I wrote about this last week, saying,
there remains a concern about the risk of cumulative radiation exposure [from] an annual chest CT … And finally, there is the concern about incidentilomas that screening CTs will bring. Incidental findings that result from a screening CT may necessitate further workup that may only confirm a benign condition. Furthermore, these tests tend to be more invasive — like a biopsy, for instance — which can put the patient at harm.
The Times also wrote cautiously about the findings, not only highlighting the cost — potentially reaching into the billions of dollars — but also the number needed to treat:
Some 300 people had to be screened to save a single life; the other 299 received needless radiation. There were scads of false positives — abnormalities that required further CT scans and sometimes biopsies or surgery to rule out cancer.
It’s important to highlight the patient experience after screening. When it comes to lung cancer, that means what happens to the majority who may have to undergo potentially needless tests stemming from false positive CT scan results.
That’s why we need to proceed with caution when it comes to screening. Mortality cannot be the only endpoint that matters.