Like thousands of others, I could face a mitral valve repair job sometime down the road. Right now, it’s just a leaky heart valve, or mitral valve regurgitation of moderate degree. Should it progress to severe, I want to be armed with information.

While reading the current issue of the British Medical Journal (BMJ), I came across something that was news to me. There has been a steady increase in valve repairs in Europe and the U.S. since the early 1990s. Not that valve replacement has become obsolete with all its daunting downsides. (A mechanical valve, made of synthetic materials, necessitates taking blood-thinning drugs for life. A biological valve, usually from animal tissue, means no blood thinners but is less long-lasting, especially in children and young adults—about 10-15 years.)

Apparently, not all people with severe mitral valve regurgitation require replacement. Instead, repair in highly experienced surgical hands can be much safer in terms of fewer complications and increased survival. According to the BMJ article, “The main disadvantage of valve repair is that not all cardiac surgeons can perform what is often technically demanding surgery.” No head-to-head comparison studies have been done and likely never will be because “the strong data favoring repair make it unethical to conduct such a trial today.”

Then I came across recent statistics for the U.S. alone, “During the last decade the practice of valve surgery has changed significantly. The surgical treatment for mitral disease has transitioned to primarily one of repair, not replacement,” according to a 2009 article in the Journal of Thoracic and Cardiovascular Surgery. “Mitral valve repair procedures increased from 19% in 1998 to 46% in 2005, with mitral valve replacements decreasing over the same period.”

How would I find a highly skilled surgeon who does lots of valve repairs … should I ever need one? I turned to Google (where else?). Here is an incomplete list of the U.S. medical centers that do mitral repair surgery. Their websites explain the different types of repair techniques; for example, valvuloplasty, which is intended to “strengthen the valve’s leaflets to provide more support and to let them close tightly. This support comes from a ring-like device that surgeons attach around the outside of the valve opening.”

While that’s interesting, what I want the most are the annual per-surgeon rates of repair, severe complications, and mortality. Dream on. More often, claims are broadly expressed, vague, or non-existent. Most of the websites are surprisingly uninformative even about how long their surgeons have been doing mitral valve repair.

My list is in no particular order, other than the fact that I liked the first website the best because it is the most comprehensive. For example, there’s an “Outcomes” section, which explains why a hospital’s mortality rate is no longer the standard for quality: “As cardiac surgery has become progressively safer over the past decade, the emphasis on ‘mortality rate’ as a marker of quality has shifted towards a better understanding of morbidities and other measures of outcomes.” A bio for each surgeon complete with his/her CV is provided, and the site mentions the skills of one surgeon who specializes in re-operation and re-repairs. There’s even a section called “General Disclosure” that describes the financial relationships between its physicians and the valve-related devices industry! The FAQ section answers any question a potential patient could ever think up about mitral repair surgery. No other website that I found comes close to this one in terms of providing crucial information.

Sure, the following centers are marketing their surgical skills over the Internet, but what else have we got—-other than a referral from a primary care physician or cardiologist. It’s not like there’s an independent, publicly accessible source of stats for all surgeons who do mitral valve repair surgery. See what you think. Maybe you’ll find better websites.

The Mitral Valve Repair Center at The Mount Sinai Hospital, New York City
Claims: “[Our Center] now offers patients the highest percentages of mitral valve repair anywhere in the world. Our mitral valve repair rates (99%) and quality (<1% mortality) are national benchmarks. In patients with mitral valve prolapse, our success rate in avoiding mitral valve replacement approaches 100%. We also have mitral valve repair expertise for patients with advanced cardiomyopathy. If patients have associated atrial fibrillation, we offer the latest in concomitant arrhythmia surgery, including the MAZE procedure. We can also perform mitral valve repair surgery with minimally invasive approaches, when appropriate.”

Cleveland Clinic
Claims: “[Our] surgeons have the world’s greatest experience with mitral valve repair.” … “[Our] surgeons are pioneers in the development of minimally invasive techniques for mitral valve repair. At Cleveland Clinic, nearly all leaking mitral valves are repaired rather than replaced, providing patients with ideal outcomes. The majority of these operations are performed minimally invasively, ensuring rapid recovery.” … “Cleveland Clinic surgeons have performed more than 11,000 mitral valve repairs, the world’s largest single center experience. In 2006, hospital mortality for primary isolated mitral valve repair was 0%. Nearly all isolated mitral valve repairs can be performed minimally invasively.”

Texas Heart Institute at St. Luke’s Episcopal Hospital, Houston
Claims: None

The Mayo Clinic
Claims: “[Our] surgeons have extensive experience in heart valve surgery, performing hundreds of surgeries each year. [Our] surgeons can perform many mitral valve procedures using minimally invasive surgery, which involves smaller incisions that often result in less pain and a quicker recovery.”

University of Wisconsin School of Medicine
Claims: “Surgeons at the University of Wisconsin are on the forefront of mitral valve repair surgery. Our doctors repair 87.5% of all people referred to this institute for mitral valve surgery. This is substantially higher than the national average of 50%”

Johns Hopkins Heart & Vascular Institute
Claims: none

Note from author: Could be a glitch in the website, but when I clicked into “Doctors who perform this treatment” only one name came up.

Massachusetts General Hospital Heart Center
Claims: “[Our] physicians are experienced in mitral valve repair and minimally invasive mitral valve repair.”

University of Maryland Medical Center
Claim (from a UMM September 28, 2009 press release):
“Now, after a six-year study, surgeons at the University of Maryland Medical Center in Baltimore conclude that minimally invasive mitral valve repair techniques, through only a two-inch incision in the right side of the chest, are safe, durable and effective. The results are published in the September 2009 Annals of Surgery. Our experience with 187 patients demonstrates that small-incision mitral valve surgery can be performed safely and effectively with a short hospital stay and a rapid recovery.”

Heart Valve Surgeon Database
Started last year, this database is by and for heart valve patients. Type in your zip code and the type of valve operation you are facing. You’ll get recommendations from satisfied customers. At present there are 586 surgeons from around the world in this database.

Added May 23, 2011: Read this study of hospital websites, which found that over one-third that feature robotic surgery use industry-generated information and fail to mention the lack of data to show it is safer or more effective than standard surgery. click here

Maryann Napoli, Center for Medical Consumers(c)