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  1. A. Cornet1,
  2. Z. Osmani1,2,
  3. S. Frankel1
  1. 1Lupus Europe, Romford, United Kingdom
  2. 2NVLE, Amsterdam, Netherlands


Background: Hydroxychloroquine (HCQ) is recommended for all patients with systemic lupus erythematosus (SLE) and is typically considered as having a good safety profile1. Yet, patient organisations observe that concerns about eye impact or “allergies to HCQ” are often raised on social media. This could contribute to the non-adherence, which varies from 3 to 76% in SLE patients depending on assessment method and drug2.

Objectives: To understand if/how some patients’ beliefs impact adherence to HCQ treatment.

Methods: In May 2019, LUPUS EUROPE launched a 29 questions on-line survey in 13 languages including questions on HCQ adherence.

2938 responses were analysed. 67.8% (1990 patients) were current HCQ users, 17.8% had stopped using it, 8.1% never had HCQ (6.4% did not respond to this question). 1820 users reported their adherence level. 314 (17.3%) were classified as “low” adherence as they reported missing/forgetting HCQ “always” (1.8%), “more than twice a week” (5.2%) or “once a week” (10.3%)

Results: The prescribed HCQ dose, kidney involvement or duration of treatment (beyond the 1st year) were found to have no impact on low adherence. Similarly, the user belief that HCQ has significant side effects, without experiencing these, was not found to impact adherence (p=.74).

The following factors were associated with better adherence: (p<.0001)

- The belief that HCQ is “Very important” (12.9% “low”) rather than “important” (22.1% “low”) or “not important / useless” (33.1% “low”).

- Taking many different medications (9.8% “low” for Patients indicating more than 7 medications vs 19.8% for those listing 3 or less)

Childhood onset of the SLE was associated with a lower adherence (30.0% “low” vs. 17.4% for later onset SLE (p<.001)

658 patients (29.6%) reported having experienced side effects. 42.6% of them stopped taking HCQ (patient led 161, doctor led 110, unclear 9). Amongst those continuing HCQ despite experiencing side effects, the proportion of non adherent patients increased to 24.7%, compared to 15.2% in the group of patients that have not experienced side effects (p=.0001). The 232 patients who talked with their Doctor and felt listened to appear to adhere better (22.0% low adherence) than the 84 who did not feel heard (31.0% low adherence), but the significance is only directional (p=<0.15)

523 patients have used HCQ in the past. 206 (39.4%) consider the decision to stop HCQ as doctor initiated, 272 (52.0%) as patient initiated, and 36 (6.9%) as a joint decision.

When stopping was patient initiated, 59.9% was due to experiencing a significant side effect attributed by the patient to HCQ, 6.7% due to concern of a potential side effect, 11.2% “tested” stopping and noticed no difference, 10.0% were not convinced that it worked, 8.2% felt their lupus was less active, 2.6% wanted to reduce pill consumption. (Side effects attributed to HCQ may relate to age, disease activity or other factors).

Conclusion: Doctors can help HCQ adherence by boosting patient’s confidence in the importance of HCQ. Better patient education may contribute to avoid up to 40% of patient initiated decision to stop HCQ treatment.

References: [1]Fanouriakis A et al. 2019 update of the EULAR recommendations for the management of systemic lupus erythematosus. Ann Rheum Dis. 2019 Jun; 78(6): 736-745.

[2]Costedoat N et al, Treatment adherence in systemic lupus erythematosus and rheumatoid arthritis: time to focus on this important issue, Rheumatology, Vol 57 (9), Sep 2018, 1507–1509.

Disclosure of Interests: None declared

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