Patient Perceptions of Gout Management Goals

A Cross-Sectional Internet Survey

Jasvinder A. Singh, MBBS, MPH; N. Lawrence Edwards, MD

Disclosures

J Clin Rheumatol. 2020;26(4):129-133. 

In This Article

Discussion

Several findings from our quality improvement initiative merit discussion. In this Internet survey of 320 respondents with physician-diagnosed gout, most of whom had active gout symptoms and frequent flares, only half were prescribed ULT by their healthcare provider, less than half were satisfied with their gout care and only one-third had their healthcare providers spend adequate time during their clinic visit discussing gout treatment. In this study, >80% reported a gout flare in the last year and >80% expected their gout to get worse over time. These findings demonstrated that quality gaps in gout care[8–10] and suboptimal gout management are still prevalent, despite a significant impact of gout on people's lives.

A third to half of the eligible patients with symptomatic gout (one or more disabling gout flares, and likely other gout symptoms) are not even treated with ULT, a treatment that is clearly associated with a reduction of gout flares and improved function.[2–4] These findings document persisting quality gaps in gout care.

Our study findings raise serious questions about ACP treatment recommendation that long-term ULT use should be guided by gout symptom control rather than T2T.[1] A limitation of T2T approach is that it is supported by observational data showing the association of serum urate lowering with a reduction of gout flares, tophi and medical care costs,[2,11,12] but no trial data, and the cut-off is somewhat arbitrary. No evidence to support treat-to-symptom approach was cited in the ACP gout guideline (and none exists to our knowledge), and it did not specify which symptom/s to target and what is the definition of the symptom target, i.e., reduction by certain percentage or elimination.[1] Thus, adopting a non-evidence based approach as a treatment target has the potential to worsen the quality of gout care.

Meanwhile survey respondents, i.e. patients with gout, considered the reduction of serum urate and the treatment of gout symptoms (two-thirds) or the reduction of serum urate (one-third) as the best gout treatment strategy. This finding puts the ACP guideline for gout management at odds with patient treatment goals. Another important finding was that the gout treatment goals did not differ significantly by age, sex or race. This indicates that our findings were not driven by one gout population subgroup.

Our findings should be interpreted considering study limitations. Since patients self-selected for participation, findings are likely not generalizable to all gout patients, only to gout patients who use the Internet. Thus, selection bias is a major limitation of this cross-sectional survey. Physician-diagnosis of gout could not be confirmed due to the anonymized nature of this survey, although this question is based on various population-based surveys by the Center for Disease Control and Prevention (CDC).[13] This was a cross-sectional QA/QI initiative and therefore associations could be in either direction, and therefore causation should not be interpreted. Data missingness was slightly larger for some questions, which further limits the interpretation of those responses; however, we did not make responses to each question mandatory to avoid patient frustration, and enhance a broader participation, an objective we achieved with a modest sample size. Comorbidity assessment with a single question and gout flare episode reporting was likely very imprecise and subject to error; we considered but did not include validated self-reported comorbidity indices due to feasibility concerns. We did not collect information about the primary gout care-provider, another study limitation. Responses to this Internet study may have come from people from the different parts of the world. While many would consider this a study strength regarding broader generalizability, some may view this as a heterogeneous patient sample.

Our study has several strengths as well. We defined a typical gout flare in our survey to be "associated with severe pain, swelling and inability/difficulty to move the joint, and lasts 7–10 days without treatment", leaving little room for interpretation by the respondent, and ensuring that this corresponded to significant pain, suffering and disability. This description equates gout flare. We focused on key questions in gout management as they related to the recently published ACP gout guideline.[1] We kept the survey brief to improve patient participation and reduce data missingness. We examined the correlation of measures of gout severity with patterns of gout management.

In conclusion, we performed a cross-sectional survey of people with self-reported physician-diagnosed gout who could access the website and reported presumed gout symptoms and gout care. We found that patient priorities for treatment differ from the published ACP guideline, and our findings can inform future guideline efforts. Low rates of ULT use and low levels of satisfaction with gout care point to the deficiencies in gout care and the need for further improvement. Longitudinal gout studies are needed to examine whether patient satisfaction with gout care and the alignment of patient priorities are associated with better gout outcomes in short- and long-term. These studies will support the importance of patient-centered and should be the foci of future research.

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