How Can We Enhance Adherence to Medications in Patients with Systemic Lupus Erythematosus? Results from a Qualitative Study

Abstract

Medication non-adherence is common among patients with systemic lupus erythematosus (SLE) and may lead to poor clinical outcomes. Our aim was to identify influenceable contributors to medication non-adherence and suggest interventions that could increase adherence. Patients with SLE from two Swedish tertiary referral centres (n = 205) participated in a survey assessing self-reported adherence to medications. Responses were used to select patients for qualitative interviews (n = 15). Verbatim interview transcripts were analysed by two researchers using content analysis methodology. The median age of the interviewees was 32 years, 87% were women, and their median SLE duration was nine years. Reasons for non-adherence were complex and multifaceted; we categorised them thematically into (i) patient-related (e.g., unintentional non-adherence due to forgetfulness or intentional non-adherence due to disbelief in medications); (ii) healthcare-related (e.g., untrustworthy relationship with the treating physician, authority fear, and poor information about the prescribed medications or the disease); (iii) medication-related (e.g., fear of side-effects); and (iv) disease-related reasons (e.g., lacking acceptance of a chronic illness or perceived disease quiescence). Interventions identified that healthcare could implement to improve patient adherence to medications included (i) increased communication between healthcare professionals and patients; (ii) patient education; (iii) accessible healthcare, preferably with the same personnel; (iv) well-coordinated transition from paediatric to adult care; (v) regularity in addressing adherence to medications; (vi) psychological support; and (vii) involvement of family members or people who are close to the patient.

A qualitative study of facilitators of medication adherence in systemic lupus erythematosus: Perspectives from rheumatology providers/staff and patients

“…Our findings echo other adherence facilitators described in previous studies, including medication affordability, patient education, improved quality of life, social support, and positive patient-provider relationship. 17,[30][31][32][33][34][35] Our results also add to the existing literature by identifying empowerment as an adherence-related concept. Although patient empowerment has been linked to medication adherence in other chronic diseases such as hypertension and diabetes, 36,37 these concepts have not been extensively discussed in the rheumatic disease adherence literature.…”

Time to onset of clinical response to anifrolumab in patients with SLE: pooled data from the phase III TULIP-1 and TULIP-2 trials

“… 16 Beyond concerns about treatment-related side effects, patient interviews highlight that a lack of response after starting new medications also contributes to reduced medication adherence. 17 A treatment that provides an earlier onset of clinical effect, and an early ability to reduce or maintain low doses of glucocorticoids may therefore reassure the patient and provide better long-term adherence in SLE. 14 …”

“…16 Beyond concerns Lupus nephritis about treatment-related side effects, patient interviews highlight that a lack of response after starting new medications also contributes to reduced medication adherence. 17 A treatment that provides an earlier onset of clinical effect, and an early ability to reduce or maintain low doses of glucocorticoids may therefore reassure the patient and provide better long-term adherence in SLE. 14 Together, these data suggest that early improvements in global and organ-specific disease activity (from Week 8) may increase the ability to taper glucocorticoid dose thereafter (Week 20).…”

Non‐adherence to hydroxychloroquine in systemic lupus erythematosus: The elephant in the clinic room

“…Qualitative studies of SLE patients have reported reasons for non-adherence to medications, including HCQ. 32,33 These include forgetfulness, fear of adverse effects, misbelief about the medications, untrust to physicians, information gaps, logistical barriers, medication burden, and the failure of acceptance of a chronic illness. As treatment of SLE is a shared decision between doctors and patients, 2,9 better communication with the patients and their close family members, enhanced patients' education, reminders for drug taking, psychological support and regular surveillance of drug adherence, assisted by HCQ level monitoring, may help to allay their anxiety about HCQ-related toxicities and improve adherence to achieve a better treatment outcome.…”