Background/Purpose:

Delays in lupus diagnosis and misdiagnosis are sources of concern, as uncontrolled disease activity and early damage can increase mortality risk.¹ The purpose of this study is to analyze the diagnostic process through the patient perspective and provide insight into unmet needs in lupus diagnosis.

Methods:

This cross-sectional study draws from a one-time online national survey conducted between December 2015 and January 2016 among 3,022 adults who self-reported a lupus diagnosis. To assess patient perspective on the diagnosis process, participants answered questions regarding symptoms pre-diagnosis, the provider(s) they discussed symptoms with, and the time frame to diagnosis. Descriptive statistics were conducted on demographic information and all diagnosis process measures.

Results:

Respondent characteristics are described in Table 1.

This analysis provides a detailed look at the diagnostic process from the patient perspective. Beginning with the symptoms prompting a first visit, musculoskeletal symptoms and fatigue illustrate the non-specificity experienced by nearly half of the respondents (Table 2). Of importance, a majority of respondents (73.2%) specifically made an appointment to discuss these symptoms, 72% discussing them with a primary care provider. Of those who discussed symptoms with other types of providers, over 75% also discussed the symptoms with a rheumatologist. Leading up to respondents’ diagnosis, more than half reported being told there was nothing wrong with them or that their symptoms were psychological (54.1%). Furthermore, 41% of respondents reported being told they had something other than lupus, and concurrently, nearly 40% of individuals waited more than one year from the onset of symptoms to receive an accurate diagnosis. At the time of diagnosis, over one third of respondents (34.5%) reported having severe symptoms.

Conclusion:

The findings of this study suggest the need to provide ongoing education to both primary care and specialty providers in diagnosing lupus. Qualitative responses in this study, not reported here, also suggest that poor provider-patient communications may contribute to the delay in diagnosis. Lastly, describing the providers and care settings typically involved in diagnosis can be useful for creating a framework to identify future areas of intervention and/or research.

1 Rahman P, Gladman D, Urowitz M, Hallett D. Early damage as measured by the SLICC/ACR damage index is a predictor or mortality in systemic lupus erythematosus. Lupus 2001; 10: 93-96.