The 2017 State of Gout Survey

Understanding the perceptions and experiences of patients with the disease and their caregivers.

May 22 is Gout Awareness Day in the United States. For the past few months, we have been working  on a comprehensive survey of 1,000 patients with gout and 500 caregivers of people with the disease. Why? To better understand experiences with the disease and to uncover insights that could spark enlightened dialogue and promote education, awareness and empowerment in our community.

What did we find? In short, gout is out of control.

“It’s startling that so many of the patients and caregivers surveyed have resigned themselves to the impacts of gout,” said Theodore Fields, M.D., Hospital for Special Surgery, New York and CreakyJoints Adviser.

The survey findings paint a portrait of a disease that is out of control. For example, patients surveyed experience an average of eight painful gout attacks per year, with more than half these patients reporting attacks that lasted three or more days. Three-quarters of patients surveyed indicated gout hinders their ability to walk, climb stairs, or sleep, causing a rippling effect not only on patients’ lives, but also on the lives of their caregivers and families.

Key findings

The study revealed that people are greatly impacted by gout. Click here to view the full news release.

Patients

• Employed gout patients reported missing an average of 6.3 days in the last year because of painful gout attacks, and caregivers who are employed missed almost 5 days because they had to provide care or assistance to a loved one experiencing a painful gout attack.
• 75% of caregivers said that their loved one would not be able to meet his or her basic needs without their help.
• 64% of gout patients blamed themselves for causing their gout. Additionally, 63 percent of patients and 68 percent of caregivers surveyed said they thought diet was the primary contributor, when heredity is an important factor.
• Only 14 percent of patients surveyed and 9 percent of caregivers surveyed correctly identified both causes of gout – namely, the body’s over-production of uric acid and/or the body’s under-excretion of uric acid.
• Nearly one-quarter of patients with gout did not have the uric acid levels in their blood tested at all in the past 12 months.

In addition to the impact on patients, caregivers are also affected by loved ones with this condition.

Caregivers

• Caregivers missed an average of 4.5 days of work in the last year because they had to provide care and assistance for their loved during a flare.
• Almost half of caregivers say that gout attacks impact their sex life.
• The vast majority of caregivers worry about gout’s impact on their loved one’s physical AND emotional health.
• More than 2/3 of caregivers (67%) said they wish their loved ones told them sooner about their gout attacks.

So now what?

These are just a few of the survey’s findings. There is clearly more work to be done to ensure our communities have the correct information about gout and that people feel encouraged to be open, honest and seek the help they need. The more comprehensive our understanding of the facts about gout, the more helpful changes we can continue to make to get this disease under control. And CreakyJoints is here to support and guide you.

Dr. Fields specializes in gout, rheumatoid arthritis and osteoarthritis at the Hospital for Special Surgery (HSS). Click here to learn more about Dr. Fields.

If you would like read more about gout, click here for a great overview provided by the Hospital for Special Surgery.

Looking for more?

Click here to view all of our resources for Gout.