SAT0423 Understanding Delay in Diagnosis, Access to Care and Satisfaction with Care in Lupus: Findings from a Cross-Sectional Online Survey in the United States

Abstract

BackgroundEarly diagnosis is an area of great unmet need in lupus. This need and other aspects of care have been reported from a provider's perspective.ObjectivesThe aims of this survey were to understand the experience of patients with diagnostic delays and to assess their access to care and the extent to which their care needs are met.MethodsAn online cross-sectional survey of English-speaking respondents aged ≥18 years with self-reported diagnosis of lupus was conducted across the US in partnership with the Lupus Foundation of America between February and March 2014. Demographic, clinical, and health-related quality of life information was collected, including a series of questions about patients' experiences with diagnostic delays, access to care, and healthcare resource use (HCRU). Satisfaction with care was measured using the LupusPRO care satisfaction scale1, which has a score range of 0 to 100 (with 100 indicating the most satisfaction).ResultsOf the 827 lupus respondents, 97.5% were females and 85.3% white. Lupus respondents took on average 2.1 years (standard deviation [SD], 4.9 years) to seek medical help from the time they first noticed lupus symptoms (95% confidence interval [CI], 1.8 to 2.5 years) and waited an average of 3.5 years (SD, 5.4 years) from the time they first sought medical help for their lupus symptoms until formal diagnosis (95% CI, 3.1 to 3.8 years). A total of 62.8% lupus respondents reported being misdiagnosed before receiving a formal diagnosis of lupus; 75% of them reported being misdiagnosed by a primary healthcare provider. The median number of providers lupus respondents visited before receiving a formal lupus diagnosis was 3 (range, 0-10+). Overall, the rate of HCRU among lupus respondents was relatively high, with fatigue being the most frequently reported cause for seeking out-patient care. Although 90.2% of lupus respondents had healthcare coverage, 21.9% (17.8% of those with coverage and 59.3% of those without) reported that they were unable to get all the prescription medication they needed to manage their lupus and 22.5% (17.4% of those with coverage and 69.1% of those without) reported that they were unable to get all the healthcare they needed including specialist care and hospitalization to treat their lupus. On the LupusPRO “satisfaction with care” domain, lupus respondents reported not being fully satisfied (mean, 61.6; SD, 31.4; 95% CI, 59.5 to 63.8).ConclusionsThe results of this survey indicate a need to address the patients' reported delays and inaccuracies in medical diagnosis, the quality of care, and the access to appropriate medical services for patients with lupus. Increased awareness of lupus symptoms in the general community and clinician education to improve understanding of both diagnostic criteria and medical treatment options are necessary to reduce the burden of illness in lupusReferencesJolly M, Pickard AS, Block JA, et al. Disease-specific patient reported outcome tools for systemic lupus erythematosus. Sem Arthritis Rheum 2012; 42: 56-65.Disclosur...

Delayed diagnosis adversely affects outcome in systemic lupus erythematosus: Cross sectional analysis of the LuLa cohort

“…Our data show a median delay of 47 months from the first SLE symptom to the diagnosis of SLE, comparable with the reported data of an US-cohort of 827 patients from Sawah et al. 3 Interestingly, the time to diagnosis in both cohorts was mainly due to the time between the first physician’s visit and diagnosis (34 ± 61.7 in our cohort vs. 41 ± 64.8 months in the cohort of Sawah et al.). In both countries, the mean time from the onset of symptoms to the first physician’s visit (13 months in our cohort versus 25 months in the US-cohort) was significantly lower compared to the time between the first physician’s visit and diagnosis.…”

“… 18 Thus a delayed diagnosis, the uncertainty caused by a delayed diagnosis and the resulting delay in therapy may be of importance. 3 Therefore, we analysed the impact of a delayed diagnosis on long-term outcome.…”

“…For example, Ozbek et al reported a mean delay of 21.8 AE 30.3 months in 136 Turkish SLE patients in 2003, with arthralgia being the most common symptom (60%) at the time of diagnosis and Sawah et al described a delay of 67.2 AE 87.5 months in 2015 in a US-cohort (n ¼ 827). 3 Reducing this delay may enable monitoring and treatment at an earlier stage before severe organ involvement might have occurred. In a Danish cohort of 100 patients with lupus nephritis followed for 15 years, a delayed diagnosis and intervention increased the risk of progression to end-stage renal disease (ESRD).…”

Health-care utilization and costs in adults with systemic lupus erythematosus in the United Kingdom: a real-world observational retrospective cohort analysis

“…We used the third year before diagnosis as a reference, to avoid distortion by the higher expected costs in the 24 months preceeding formal SLE diagnosis. Specifically, previous research has demonstrated that patients present with symptoms that might not be recognized immediately; for example, Al Sawah et al [ 35 ] reported an average of 2.1 years between first lupus symptoms and seeking of medical care. We then used a random-effects (random intercepts) model to estimate patient-specific annual trends in mean all-cause health-care costs, adjusting for age and disease severity.…”

Targeted Delivery of Chloroquine to Plasmacytoid Dendritic Cells Enhances Inhibition of the Type I Interferon Response

“…Clinical manifestations are heterogeneous with varying disease severities, organ involvement, and cellular abnormalities (4,5). The clinical course is unpredictable, with frequent flares, which contributes to both delayed diagnosis (an estimated six years after initial presentation) (6) and difficulties in treatment. Circulating immune complexes, consisting of autoantibodies and endogenous antigen, are deposited in tissues leading to inflammation and end-stage organ damage.…”