Irritable Bowel Syndrome (IBS) Patients Struggle with Diagnosis, Unhappy with Healthcare Providers
—Health Union Survey Finds IBS Patients Desire More Information About Condition’s Impact on Their Lives—
April 12, 2017
By Editorial Team
IBS In America 2017, a national survey by Health Union of more than 1,300 individuals who have experienced Irritable Bowel Syndrome (IBS) symptoms, reveals many people initially chose to do nothing about symptoms and often received an improper diagnosis.
The survey, released through Health Union’s online community, IrritableBowelSyndrome.net, also finds patients are unsatisfied with their health care professionals (HCPs), struggle with negative feelings, and a majority are also diagnosed with other health conditions.
IBS is a condition involving abdominal discomfort or pain and accompanying changes in bowel habits: predominantly diarrhea or constipation, or alternating occurrences of both. IBS is reported to occur in roughly 10 to 15 percent of adolescents and adults in North America. However, these numbers are thought to be vastly underreported due to many people self-treating and not being formally diagnosed (much as found in this survey). Other symptoms may include, but are not limited to, heartburn or acid reflux, and nausea.
Many respondents reported first experiencing symptoms at a young age, with almost 25 percent before age 18. However, many did not seek a formal diagnosis until well until adulthood or never sought one at all. When first experiencing symptoms, many respondents said they simply chose to ignore them, while others didn’t think the symptoms where serious enough to seek medical attention. Fifty-three percent tolerated symptoms and went on with their lives, 43 percent tried to treat with over-the-counter medication, 29 percent didn’t think symptoms were the result of a medical condition, and 26 percent didn’t believe the symptoms were serious enough to seek medical care.
For those who chose to seek a diagnosis, the path often proved difficult, with many (37 percent) receiving a wrong diagnosis of gastroesophageal reflux disease (GERD), depression, lactose intolerance, stress/anxiety, or food allergies, to name a few.
“It took a number of years before I was diagnosed with IBS because there was no one particular diagnostic test, and it was frustrating not having any answers or clear direction for treatment during this time,” said IrritableBowelSyndrome.net patient advocate Hannah Noonan.
Respondents reported the difficulty receiving a diagnosis was just the beginning of their negative experiences, with four in 10 not satisfied with their current healthcare provider for IBS. After a diagnosis, many chose not to continue seeing a healthcare provider for their IBS. As reasons for not seeking HCP care, 44 percent cited that they don’t find it helpful, 23 percent financial and/or insurance reasons, 22 percent satisfied with self-management of symptoms, and 22 percent not finding the right doctor.
Post-diagnosis, many respondents struggled with negative feelings and wished they had more knowledge about the impact IBS would have on their lives. Sixty-two percent were frustrated that they may never find a way to manage symptoms, 53 percent were upset that there is no cure, 38 percent were scared of the negative impact on social and family life, and 37 percent that their healthcare provider was dismissive that it was “only IBS.” In addition, when first diagnosed, respondents wished they had known how IBS related to various foods (71 percent), all of the symptoms caused by IBS (69 percent), the effect of IBS on lifestyle (63 percent), and the impact of IBS on mental health (62 percent).
“It seems that many health care providers underestimate the impact IBS has on people’s lives,” Noonan added. “People often report that health care providers dismiss the severity of their symptoms by using terms like ‘it’s just IBS’, but for many people IBS can be debilitating and make everyday tasks like enjoying a meal, going to work or spending time with family and friends difficult.”
On top of all of the issues presented by IBS, patients often have to cope with additional health conditions. Nearly all (98 percent) respondents reported this – with 51 percent having been diagnosed with allergies, 50 percent anxiety or panic disorders, 47 percent overweight or obesity, 40 percent GERD, 39 percent arthritis, and 36 percent hypertension.
“The frustration that many IBS patients clearly feel illustrates the need for the information, validation, and support provided by a site like IrritableBowelSyndrome.net,” said Tim Armand, president and co-founder of Health Union. “People can come together in an online, trusted community and share information and also tap into the Health Union team resources.”
“To find a company working in the healthcare industry that actually puts the needs of patients first is, unfortunately, still a rare thing. Health Union is doing just that by creating communities for patients with chronic conditions, like IBS, where they can find relevant, helpful information and support from others who understand,” said Emily Downward, IrritableBowelSyndrome.net patient advocate.
A summary infographic of the survey results is also available.
The IBS In America 2017 survey was conducted online between January 3-31, 2017. More details about the survey are available upon request; email Insights@health-union.com.