Upper Nyack, NY – CreakyJoints has released a new, comprehensive survey of 1,000 gout patients and 500 caregivers of gout patients, which paints a portrait of a disease that is out of control. Patients surveyed experienced an average of eight painful gout attacks per year and more than half these patients reported attacks that lasted three or more days. Moreover, 76% of patients 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.

More than two-thirds of patients and nine in 10 caregivers surveyed said they accept painful gout attacks as part of living with the disease, even though most of these same patients and caregivers also stated they were satisfied with existing gout treatments, indicating a disconnect.

“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 Advisor. “Medically speaking, patients who have more than two gout attacks per year and persistently high uric acid levels above 6 mg/dL are considered to have uncontrolled gout and need to talk to their doctor right away. Patients surveyed reported an average of eight gout attacks per year, a quarter of these patients said they didn’t have their uric acid tested in the past year, and only one in 10 knew what their target serum uric acid number should be. There is much work to be done to educate patients with gout and their caregivers to help get the patients’ gout symptoms under control.”

A Pain Worse Than Childbirth

Most patients surveyed (82%) said that others do not understand how painful gout attacks can be. Among the 204 women with gout who have children, surveyed, when asked how strongly they agreed with the statement that gout attacks are more painful than childbirth, almost half (44%) agreed or strongly agreed.

Impact on Work and Family

According to 93% of gout patients surveyed, gout pain is very often debilitating and represents a serious quality of life issue for patients.

  • Employed gout patients surveyed reported missing an average of 6.3 days of work 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.
  • Nearly 70% of patients surveyed said gout has a negative impact on their family and 74% of caregivers agree.
    • Almost 60% of patients surveyed admitted they wouldn’t be able to meet their basic needs (e.g., running errands, bathing, etc.) during a gout attack, if they did not have someone to help them.
    • When asked the same question, 75% of caregivers surveyed said that their loved ones with gout depend on them to meet their basic needs during a gout attack.
  • Almost half of patients with gout (44%) and their caregivers (41%) surveyed indicated that the patient’s gout attacks takes a toll on their sex life.
    • Seventy percent of gout patients between the age of 18 – 44 noted that their gout flares take a toll on their sex life.
    • More than half (52%) caregivers between the age of 18 – 44 age range said that their loved one’s gout flares take a toll on their sex life.

The Blame Game and a Lack of Understanding

Stereotypically, gout is blamed on the patient’s overindulgence in a diet rich in purines, like red meat or from drinking too much alcohol. However, hereditary factors contribute significantly to gout, a fact that only 35% of gout patients and 34% of caregivers surveyed identified as true. The survey revealed these misconceptions regarding diet remain:

  • Sixty-four percent of gout patients surveyed indicated feeling responsible for causing their gout due to their diet and/or alcohol consumption.
  • In addition, 63% of patients surveyed believed that diet is the primary contributor to elevated sUA levels.

There are two causes of gout – overproduction and underexcretion of uric acid – with only 14% of gout patients and 9% of caregivers surveyed correctly citing both causes contributing to gout.

  • Moreover, merely 11% of patients and 9% of caregivers surveyed knew that the target sUA levels for gout patients was less than 6 mg/dL.

“The fact is that heredity is an important factor in gout. While I always counsel patients with gout to modify their diet and alcohol consumption, frankly, it is often not enough to get them to their target serum uric acid level,” added Dr. Fields. “Gout has two genetic causes: the body’s over-production of uric acid, and the body’s under-excretion of uric acid, and the genetic cause is different in different people. Both lead to the high uric acid levels that cause gout.”

Hiding from Loved Ones, Underreporting Symptoms to Doctors

Concerningly, nearly three in 10 patients surveyed admitted to hiding gout attacks from loved ones, with more than two-thirds of caregivers surveyed stating they wish their loved ones would tell them sooner when they are experiencing a gout attack.

Despite the negative impact gout has on their lives, half of patients surveyed do not report all their gout attacks to their doctor. Nearly a quarter of patients indicated that they had not had their sUA tested in the last year, even though more than eight in 10 patients and caregivers surveyed said that regular monitoring sUA is important – even when patients are not experiencing gout attacks.

Of caregivers surveyed, the majority worry about gout’s impact on their loved one’s physical (94%) and emotional (87%) health.

According to Dr. Fields, patients must be transparent to their loved ones and their doctor about the impact of gout. “If patients are not reporting every single flare to their doctor, then doctors are not getting the full story. When doctors have an understanding of the patient’s experience, they’re in the best position to help with the patient’s treatment plan. Doctors should also test their gout patients’ serum uric acid levels regularly to ensure these patients are reaching and sustaining the target goal of under 6 mg/dL.”

“Patients with gout and their caregivers should be empowered to ask for help,” says CreakyJoints co-founder and Executive Director, Louis Tharp. “Reach out for resources in your community, and be honest with your doctor and loved ones about your symptoms, including all your gout attacks. Get the uric acid in your blood to target level. Together, we can take the steps to get gout back in control.”

The survey was conducted online among patients with gout and caregivers of patients with gout in March 2017 to gain insight into their perceptions of and experiences with gout. Edelman Intelligence conducted the survey, which was made possible by CreakyJoints, with funding from Ironwood.

About Hyperuricemia and Gout

Gout, the most common inflammatory arthritis in adults, is a highly symptomatic and painful form of inflammatory arthritis caused by hyperuricemia – high serum uric acid (sUA) levels in the blood – which can lead to painful flares. Some patients are able to lower sUA levels sufficiently using a xanthine oxidase inhibitor (XOI), such as allopurinol. However, an estimated two million patients currently treated with an XOI in the U.S. suffer from uncontrolled gout, which means they are not achieving target sUA levels below 6 mg/dL, as recommended by the American College of Rheumatology. This can be due to missing doses of their medication, inadequate XOI dosing, or failure of the XOI alone to push the sUA low enough. Long term effects can be serious for patients with elevated sUA levels, which is why it is so important for gout patients to reach target sUA levels.

Gout is almost always hereditary and not only a lifestyle disease. While diet and lifestyle recommendations are important considerations in the management of gout and its comorbidities, they’re often not enough to get these patients’ sUA levels to target. There are two mechanisms of the disease that can lead to high serum uric acid levels: overproduction and underexcretion of UA. It’s important for patients to know their serum uric acid levels, and for those patients with levels above 6 mg/dL to talk to their doctor about possible treatment options.

More information about gout is available at www.CreakyJoints.org/goutsurvey and www.LetsTalkAGoutIt.com.