Background and aims Patient perspectives in lupus are poorly understood; better understanding by manufacturers and regulatory agencies is necessary for patient-focused drug development. This study’s aims were to obtain the patient view of symptom impact and unmet need among those with systemic lupus erythematosus (SLE), including those with skin manifestations.
Methods The study population consisted of consenting, adult members of an English-language, lupus-focused social media community. A 23-item on-line questionnaire including an embedded consent form was deployed. Both structured response category and open-ended questions were included to allow for emerging concepts. An Institutional Review Board reviewed this study and gave an ‘exempt’ determination.
Results Respondents (n=569) were majority female (97%), aged 40–59 (66%) and using medications consistent with SLE (e.g., 69% hydroxychloroquine). Fatigue was the most frequently-reported (90%) symptom of great impact, followed by joint pain (74%) and other pain (57%). In open-ended responses, the most frequently-mentioned theme was impact on normal/daily life activities (Figure 1).
Among those reporting ever having skin symptoms (n=404), light sensitivity was the most frequently-reported skin symptom of great impact (66%). This varied when comparing African Americans (n=77) and whites (n=245), where hair loss (56%) and light sensitivity (68%) were most frequent, respectively. In open-ended responses about how skin symptoms affect life, activity limitations due to sun/light/heat sensitivity were the most frequently-mentioned themes (Figure 2).
Finally, considering novel treatment preferences, desire for pain/fatigue relief were most commonly cited (about one-third each).
Conclusions This large, non-clinical study suggests several outcomes of meaningful importance to SLE patients, including those with skin symptoms.
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