Some of my HeartSense blog posts are picked up and published on CardioExchange, a social network run by the New England Journal of Medicine which, as I write this, has 2,572 members. The site was established as a safe environment for cardiologists to exchange views candidly and learn of breaking cardiovascular news quickly. I thank CardioExchange for extending an invitation to me, a journalist, to join its site and for finding some of my posts worth their time to read. I learned yesterday that the public can see blog posts at the site but can not see comments. And so with permission from Harlan Krumholz, editor of CardioExchange, I reprint comments made to my post “Heart Failure Death Statistics: Don’t believe what you read on the internet”. I reprint only those comments made by doctors who also gave me permission to publish their comments here.
Some commenters agreed that there are glaringly wrong statistics about life expectancy with heart failure on the internet and some expressed strong beliefs about the need to pursue the prevention of heart disease.
To read the blog post that drew these responses, please scroll down to the post titled “Heart Failure Death Statistics”.
Below are comments reprinted from CardioExchange:
Mark Dayer, PhD MRCP Physician, Taunton, , GB
Competing interests: none
I could not agree more. I now have to advise patients to be a little wary of the statistics quoted on many reputable websites. Although mortality for patients with intractable and unstable symptoms remains high, for many the annual mortality is much lower. I would hope that organizations such as Kaiser Permanente which collects a lot of data on patients electronically will be able to answer this question in time. In the UK more and more hospitals are routinely collecting data on all heart failure admissions and mortality data will follow from this.
Mary Knudson, Health Journalist Other, Silver Spring, MD
Competing interests: none
So glad to hear you say this. Thank you for telling patients that much of the time heart failure is not what it sounds like and that life expectancy for people with heart failure is increasing. I recognize that mortality remains high for patients with intractable symptoms, and for some others, there is the possibility of sudden death. But I wish all reputable websites would take the responsibility of publishing prognosis statistics they can gather from experienced cardiologists who see many heart failure patients or else just not address the subject at all. What is not right is to frighten newly diagnosed patients who are seeking information about their condition and read these terribly outdated death statistics.
I applaud what the UK hospitals are doing. I wish in the U.S. we could create a national registry or a huge prospective study in which information is collected uniformly and patients’ doctors would give out the information on the cause of death for the registry rather than have a third party try to ascertain from death certificates who died of heart failure. In addition to accurate death rates of people dying from heart failure itself and those experiencing sudden death, we could learn what medical regimens those who died were on and see if there is a pattern of people dying who didn’t get the best treatments. We not only want to know how many people die of heart failure. We want to know why they die. We could also gather a trove of genetic data that one day could be very helpful.
Thank you very much for commenting.
Barry M. Massie, BA (Harvard), MD (Columbia P&S) Physician, San Francisco, CA
Competing interests: none
I remember talking to Mary Knudson some time ago. I made the point that there is no one mortality rate for heart failure patients. Patients hospitalized for their first episode of heart failure have a poor prognosis, especially if it is caused by myocardial infarction, and the 50% 50-60% year mortality rates reported from the Framingham study in the late 1990s were astonishing. As noted by other commentators, these deaths often are not caused by heart failure or even related to cardiovascular disease. In a follow-up study from Framingham published in 2002, however, there was these rates had declined by 31% and 32% in men and women, respectively. Most of this improvement occurred between 1980 and 2000 and probably reflected the impact of ACE inhibitor and beta-blocker therapy.
But numbers don’t tell the whole story.
Framingham MA, a relatively homogenous, middle-income town is not reflective of the United States. Nor is Olmstead County MN, mentioned by Ms. Knudson. By and large, residents of these communities have good access to health care. Another source of statistics is the data generated from large clinical trials. Compared to epidemiological studies, these patients uniformly have a much better prognosis. Why? They are carefully selected for the absence of other serious comorbid conditions and for their adherence to treatment. Their follow-up in the trial is frequent and rigorous. In these, mortality rates often fall below 5-8%/year, even in the control groups.
Despite what impresses me as a dramatic improvement in the outcomes of heart failure patients in the more than 30 years I have worked in this field, we still have a long way to go. Unfortunately, the attention focuses on the dramatic treatments that make it to TV—transplants, left ventricular assist devices, implantable defibrillators, stem cells. Yes, these work, but the costs are high, and the numbers of appropriate candidates for these are relatively small and will remain limited.
Hence, my plea would be that we shift our focus to prevention. Heart failure is relatively easy to prevent but will take a shift in our behavior. Early detection and effective treatment of hypertension can prevent up to 50% of all new heart failure cases. Prevention of heart attacks with changes in diet, life style, and smoking cessation will prevent another large number of heart failure cases. Changing diets can have a similar effect. A decrease of 1 to 3 grams of daily salt would save more lives than all of these high-tech interventions taken together.
Those of us who work in the field and keep up with the basic research advances in our understanding of the potential mechanisms causing heart failure and novel treatment targets are aware of the large number of potential therapies that have not been developed because the large pharmaceutical companies prefer to develop “me-too” drugs where the path to approval is more straightforward and the risk is less. Research is risky, but marketing works. In the end, they seem more interested in winning the marketing war than investing in “finding the cure”.
Using the usual sports adages, if we want to win the war on heart failure, we have to invest. We need to change behaviors, emphasize prevention, and build on the great success of the decades of neurohormonal-directed interventions with novel and complementary approaches.
This should be the role of the NHLBI. It needs to invest in the next generation of novel therapies, perhaps in partnership with the industry. It should use its prestige and resources to educate the public. As a recent seminal analysis by Bibbins-Domingo in the February 18 issue of the NEJM demonstrated, just a moderate reduction in salt intake (largely driven by intake of processed foods and fast-food restaurants) would have a major impact on cardiovascular outcomes including heart failure. It would be much more cost-effective and save many more lives if we direct our research toward the prevention of heart failure or early diagnosis and modification of the process in its early stages. Wouldn’t this be a wiser way forward investing enormous resources on developing high-tech interventions for the tip of the iceberg of patients with advanced heart failure?