The providers and patients who participated in this study expressed conflicting opinions regarding gout management. The providers saw gout as a treatable condition in which the majority of patients understood disease management and prevention, and did well with both acute and chronic disease therapies. Providers overwhelming thought they had the training and skills necessary to provide the patient education necessary to teach disease self-management behaviors. In contrast the patients had a wide range of knowledge, beliefs and experiences regarding gout. Some patients felt the medications for acute gout symptoms were ineffective. Many patients were unsure of the duration of chronic therapy with ULDs. Some felt these medications triggered or worsened their disease as they were unaware of the risk of gouty flares with ULD initiation. Most nonadherence by patients was purposeful and due to clinical factors and financial concerns. Patients felt they would benefit from more information, more time for interactions with their providers and greater awareness on the part of providers on the use of natural remedies.
The majority of providers were unaware of the difficulties patients have with gout treatment. There are several possible explanations for these findings. There has not been much research comparing medication adherence across multiple chronic conditions, thus providers are likely unaware that adherence to chronic gout medications is worse than for other conditions.[12
] Another possible explanation is that much of the work documenting deficits in care of gout have been published in subspecialty journals which may not be read by a general primary care audience.[5
] Also, until recently there has not been much published on the implications of gout in terms of morbidity and mortality as well as associated health care utilization and costs.[21
While the patients were not matched to the participating providers, patient and provider miscommunication is likely a contributing factor to suboptimal gout management. The providers thought they had the skills necessary for patient education, while patients had unanswered questions about the etiology and management of gout. One possible explanation is inadequate health literacy, which is increasingly being recognized as a large problem that impedes patient education, following instructions from a physician and taking medication properly.[25
] While providers had very few suggestions regarding how to improve care, it is likely more creative ways to educate and counsel patients are needed. These might include sending educational materials prior to appointments in order to facilitate a more effective dialogue, use of support staff for following up with patients, as well as motivational interviewing.[26
The purpose of this study was to identify potential hypotheses to be explored further to explain suboptimal management of chronic gout. Of interest is the finding that nonadherence to ULDs in most part was intentional. This was related to gout flares with ULD initiation. The lack of prophylaxis with colchicine or NSAIDs and lack of patient education on the short-term effects of ULDs greatly contributed to this. We are currently developing a patient questionnaire to explore the issue of gout flares with ULD initiation in a larger patient population.
An important strength of this study is that it is the first to identify both patients who were new users of ULDs and providers. This allowed us to better identify facilitators of, and barriers to effective management. This study does have several limitations. First, we performed a relatively small number of interviews with gout patients and providers and this may limit the generalizability of the results. However, this approach should be sufficient to learn about the range of ideas patients and providers hold about the condition in preparation for quantitative studies in the future. Also the patients who were interviewed may or may not have been cared for by the providers who participated. Given the small number of providers interviewed, we are unable to make comparisons across specialties. Because this study was conducted in the context of a managed care health plan, the findings may not be generalizable to patients with other types of insurance or who are uninsured. Furthermore, all the patients were Caucasian, so we do not know if members of other racial or ethnic groups would have responded similarly. Additionally, as in any qualitative interview study, the interviewers may have inadvertently influenced the subject’s responses.
This work identifies patient and provider barriers to the optimal management of gout. In follow-up to these in-depth interviews, further questioning of providers regarding their knowledge of treatment guidelines and literature documenting deficits in care is necessary. This is essential as a few patients reported unusual treatment practices including being told by their provider to change the ULD dose during acute gouty attacks. In the meantime, these findings suggest changes in current clinical practice may be warranted. Providers should routinely offer prophylaxis at the time of ULD initiation and inform patients of the risk of a gout flare with ULD initiation. In addition, information regarding the short-term and long-term effects of ULDs may need to be reinforced to patients in multiple modes (i.e. orally and in print) as well as at multiple time points. Follow-up telephone calls or face-to-face encounters after ULD initiation may be useful to review the goals of therapy, troubleshoot problems and answer any questions that have arise. Patients should be encouraged to practice self-management of gout. In summary, these findings are an important first step in understanding patient and provider views regarding gout management.