
Background: The KESLER (Kenya Systemic Lupus Erythematosus Register) study is an ongoing multi-centre registry study collecting data from patients with systemic lupus erythematosus (SLE) across Kenya to examine specific outcomes of SLE in the setting of a low- and middle-income country (LMIC).
Objectives: We aimed to examine medication adherence and identify barriers and facilitators to adherence in a cohort of patients with SLE from the KESLER register.
Methods: We designed a survey to establish medication adherence using a modified version of the CQR5 (5-item Compliance Questionnaire for Rheumatology) medication adherence questionnaire [1]. We included supplementary questions from a context-specific questionnaire developed and integrated into the study to directly address economic barriers impacting adherence. This included information on employment status, monthly household income and the presence of private health insurance for SLE care. Using binary classification, we grouped patients into high and low adherence groups based on the number of “Yes” responses and calculated frequencies and percentages for each category. High adherence was defined as a score of ≥4 “Yes” responses on the CQR5 questionnaire, whereas low adherence was categorised as a score of <4 “Yes” responses.
Results: Of 82 patients invited, 60 (73.2%) responded. The majority of respondents (58, 96.7%) were female. Employment and income data showed that 58.3% of participants were employed, 35.0% were unemployed, and 6.7% were students. A minority of participants (22, 37.9%) reported having private health insurance covering their SLE care, while the majority (36, 62.1%) did not. Monthly household income among the employed was distributed as follows: 48.4 % earned below $400, 27.2% earned $400–800, 24.4 % earned above $1200. The most prescribed medications were hydroxychloroquine (84.5%) and prednisone (53.4%), followed by azathioprine (32.8%) and mycophenolate mofetil (25.9%). Less frequently used medications included methotrexate (5.2%), rituximab (6.9%), and cyclophosphamide (3.4%). Four (6.7%) patients relied on herbal or traditional therapy. A majority of patients (43, (71.7%)) reported behaviours or beliefs aligned with high adherence. Confidence in the rheumatologist and structured habits like storing medication consistently showed the strongest positive responses. Seventeen (28.3%) patients exhibited behaviours or beliefs that could indicate low adherence, such as forgetting to take medication and lacking fear of missing doses linked to disease perception. The most common reasons for missing medication were financial constraints (58.9%), forgetfulness (50.0%), and difficulty accessing medications (23.2%). Other notable factors included concerns about side effects from therapy (21.4%), feeling better and thinking treatment was unnecessary (21.4%), and medication fatigue (19.6%). Less frequently cited barriers were mental health challenges (14.3%), mistrust in treatment effectiveness (5.4%), and cultural or spiritual beliefs (1.8%). Notably, in 19 out of 52 (36.5%) patients, cost was as significant a factor in the discontinuation and subsequent change of therapy as doctor’s recommendation (36.5%), further emphasising the substantial financial burden patients face in cost of SLE care in Kenya. Fourteen out of 52 (26.9%) patients reported stopping treatment without consulting a healthcare provider. When asked what would make adherence easier, financial assistance programs were the most frequently reported solution in 48 out of 59 (81.4%) respondents, highlighting the overwhelming impact of cost of healthcare on medication adherence. Other significant solutions included a better understanding of the disease and medications (61.0%) and community support groups (39.0%) as important facilitators.
Conclusion: We have identified significant barriers to medication adherence in LMIC settings. Lower adherence was multifactorial and highlights the need for comprehensive interventions, including financial support and patient education, to address both economic and behavioural barriers to medication adherence. It will be essential to incorporate these socioeconomic factors into the design of interventions aimed at improving healthcare access and promoting equity in the Global South.
REFERENCES: [1] Hughes LD, Done J, Young A. A 5 item version of the Compliance Questionnaire for Rheumatology (CQR5) successfully identifies low adherence to DMARDs. BMC Musculoskelet Disord . 2013;14(1):286. doi:10.1186/1471-2474-14-286.
Acknowledgements: The KESLER register is funded by The Liverpool Centre for Global Health Research as part of a PhD study. We gratefully acknowledge their support. We acknowledge the patients for their invaluable contributions to the registry. We thank the investigators and staff of the KESLER registry for their dedication to data collection and management.
Disclosure of Interests: Sheilla Achieng: None declared, Ian Bruce Nature of conflict: Speaker Bureau: Astra Zeneca, Janssen, GSK, Novartis, Nature of conflict: Consulting fees: Astra Zeneca, Janssen, GSK, Novartis, Takeda, BMS, Nature of conflict: Grants to Institution from Astra Zeneca, Janssen, GSK, Otsuka, Lance Turtle Nature of conflict: Speaker Bureau: Eisai Ltd, Nature of Conflict: Consulting fees: Astrazeneca, Synairgen, George Oyoo Nature of conflict: Grant to Institution from Pfizer.
© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license (