African-American veterans with gout discuss their key self-management strategies
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Fear of pain, the development of a positive outlook and the need to adhere to medication regimens are among the main themes that drive African-American veterans to improve gout self-management, according to results.
Researchers interviewed 35 African-American veterans with gout at study sites in Birmingham (n=18) and Philadelphia (n=17) between 2012 and 2014. Patients had to have filled urate-lowering therapy (ULT) prescriptions for at least 6 months prior and had at least 80% ULT medication possession ratio (days’ supply filled/days in the duration of the prescription). Interviews included open-ended questions and related probes based on previous research on the topic. Questions were structured around the following general topics: finding out about gout; beginning formal medical care; the course of the gout; medication adherence; dietary strategies; comorbidity and side effects; and help from social support systems. From these interviews, the following themes emerged as important aspects of gout self-management: fear of pain; adherence to medication; self-discipline; lifestyle changes; information gathering; and positive outlook.
Fear of pain was a major driver of effective gout self-management. All interviewees at both study sites characterized the pain they experienced with their first and subsequent attacks of gout as “excruciating.” While the specific manifestation and distribution of the pain varied between patients, all emphasized the importance of seeking medical help to control and prevent pain.
Likewise, all participants reported that regular adherence to medication regimens was important to managing gout. All discussed including allopurinol (or another ULT) among their medications. Participants noted that complying with a ULT regimen significantly reduced the number and frequency of their gout flares, and told stories of how accidentally skipping a few doses resulted in a severe gout flare and pain.
Within the context of a U.S. veteran background, respondents stressed the importance of self-discipline in managing their gout. The interviewees described having regimented, “military-like” schedules and organizational systems for their medications. Despite sometimes being reminded by spouses or family members to take their medication, most veterans believed their military background equipped them with the self-discipline needed to successfully adhere to their medication regimens.
As important as medication adherence was to patients, they also expressed an awareness of the need to implement a healthy lifestyle. Maintaining a healthy diet and exercising regularly were cited as mainstays of their gout-self management. Most participants talked about avoiding rich, high-risk foods, such as fried meat, or seafood, including shellfish.
Being knowledgeable about gout and continually seeking new information and education was mentioned as a key component of gout self-management. This habit, “information gathering,” involved obtaining new information from physicians, health care providers, other patients, web sites and printed literature.
Lastly, the interviewees discussed the importance of developing and maintaining a positive attitude about gout. The concept of believing in a better outcome was emphasized as having a powerful effect on successful disease management, Although the participants acknowledged that gout cannot be entirely cured, they expressed a belief that rigorous self-management efforts and a positive attitude could go a long way toward living a healthier, happier life with gout.
“We found that African-American men with gout with high medication adherence identified several key themes for optimal gout self-management, which mapped to the health belief model,” the researchers wrote. “These patients also provided several messages for other gout patients regarding how to improve gout self-management. The knowledge gained from this study will lead to the development of a patient-centered intervention to improve gout self-management.” -by Jennifer Byrne
Disclosures: Singh reports receiving consultant fees, speaking fees, and/or honoraria from Savient, Regeneron, Merz, Iroko, Bioiberica, Crealta, Allergan, WebMD and UBM (less than $10,000 each), and from Takeda (more than $10,000); serves as the principal investigator for an investigator-initiated study funded by Horizon Pharmaceuticals through a grant to Dinora, a 501c3 entity. Pullman-Mooar reports a research grant from Takeda.