Pectus excavatum is the most common anterior chest wall deformity, occurring in almost 1 in 500 individuals. Pectus excavatum can cause minor or sometimes severe cardiopulmonary symptoms. Related psychosocial complaints can include poor body image or self esteem due to cosmetic appearance. In moderate to severe cases, surgical correction may be necessary.
"People with this condition experience a multitude of symptoms but they often feel ignored by their providers," says author Robert Eisinger, an MD-PhD student at the University of Florida College of Medicine who leads the Facebook Pectus Awareness and Support Group. "I've heard countless stories from patients in our support group. This condition is actually quite common and yet we hear too often that medical providers commonly have very little to say on the matter when patients voice concerns."
Eisinger teamed up with Dr. Saleem Islam, MD, MPH, Division Chief of Pediatric Surgery at the University of Florida. They designed a questionnaire to quantify some of the issues that they have repeatedly heard, one patient at a time. "We needed to take this from a he-said she-said situation and formally study these problems to present them to the medical community," said Eisinger.
In the study, 331 people from around the world with untreated pectus excavatum answered questions about living with pectus. They found that 46% and 31% of participants experience daily physical and psychosocial symptoms, respectively, but that providers disproportionally focus on physical symptoms if they even address the concerns at all. The overwhelming majority of people responded that their providers could do more to address their symptoms, and only 8% of people were very satisfied after their most recent healthcare visit about pectus.
"Our results clearly describe a group of people with a condition that affects their daily lives, for which providers are failing to recognize," said Eisinger. "One of the most alarming findings was that over 50% of people have encountered providers who lacked even basic knowledge about pectus excavatum." Eisinger hopes that these results will lead to broad awareness about issues surrounding pectus and motivate more studies.
The full results from the questionnaire can be interactively viewed at eisinger.me/pectus/study.