Feasibility and acceptability of an innovative adherence intervention for young adults with childhood-onset systemic Lupus Erythematosus

Abstract

Background: In Childhood-Onset Systemic Lupus Erythematosus (cSLE), poor medication adherence rates are very high. Interventions targeting this problem in cSLE are limited thus effective interventions are needed. The objective of this study is to examine the feasibility and acceptability an intervention (automated digital reminders + personalized prescribed treatment plan (pPTP)) to improve medication adherence in young adults with cSLE over 3 months. Method: This is a proof-of-concept randomized controlled study. All participants received SimpleMed+ pillboxes that track adherence. The treatment group received a pPTP, and in month 2, preselected digital reminders for missed doses. Reminders were discontinued after 30 days and adherence data collected. Data analysis was done using t-tests. Results: Twenty-one participants were approached and nineteen consented to participate, yielding a recruitment rate of 86%. Participants were on average 20.5 years, mostly black (58%) and female (84%). Of the nineteen consented, eleven were randomized to control (57%) and eight to treatment (42%) groups respectively. All participants in the treatment group rated the pillbox as easy to use, notably; none reported boredom with the pillbox or reminders. Also, 88% of participants in the treatment group rated the pillbox as helpful, however, only 50% reported the pPTP taught them new information about lupus or made them more interested in their lupus management. Conclusions: This is the first use of an electronic pillbox to track adherence to multiple medications in cSLE. The high rating of the pillbox makes it an acceptable method of measuring adherence. Feasibility and acceptability ratings for the intervention were mixed suggesting a there is a subset of cSLE patients for whom this intervention would be beneficial. Future research should focus on a larger trial.

Adherence to medication by adolescents and young adults with childhood-onset systemic lupus erythematosus

“…Numerous interventions have been attempted, including electronic pill boxes, smartphone apps, and text message reminders. 21,48 These strategies have demonstrated variable and incomplete effectiveness. 21,23,43,48 The variety of adherence barriers reported in our patient population suggests that an individualized, patient-oriented approach tailored to each patient’s adherence barriers may be needed.…”

“…21,48 These strategies have demonstrated variable and incomplete effectiveness. 21,23,43,48 The variety of adherence barriers reported in our patient population suggests that an individualized, patient-oriented approach tailored to each patient's adherence barriers may be needed. Main limitation of our study is the use of a sensitive self-reporting tool.…”

Non-pharmacologic therapies in treatment of childhood-onset systemic lupus erythematosus: A systematic review

“…The pediatric rheumatologist 27 is often reported to be the patient's primary medical home. 68 Patients place a high level of trust in their rheumatological provider and their team in managing their cSLE and associated symptoms.…”

A systematic literature review of existing tools used to assess medication adherence in connective tissue diseases: the state of the art for the future development of co-designed measurement tools

“…These questionnaires are often validated with statistical tests and combined with other subjective or objective measures, thus improving the consistency of the results (55). The MASRI questionnaire was adopted in five papers (20,25,30,33,47) and all studies explored the adherence rate in SLE. The CQR was used in four publications (18,22,27,41 not only in lupus, but also in systemic sclerosis and Behçet's disease, given it is specific for rheumatological disorders.…”