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Abstract Number: 0624

Validation of a Self-reported Measure of Extent and Reasons for Nonadherence in SLE

Kai Sun1, Amanda Eudy2, D. Ryan Anderson3, Rebecca Sadun2, Lisa Criscione-Schreiber1, Jayanth Doss2, Jennifer Rogers1, Theresa Coles2, Corrine Volis4 and Megan Clowse5, 1Duke University School of Medicine, Durham, NC, 2Duke University, Durham, NC, 3Duke University Medical Center, Durham, NC, 4University of Wisconsin School of Medicine and Public Health, Madison, WI, 5Duke University, Chapel Hill, NC

Meeting: ACR Convergence 2021

Keywords: health behaviors, Measurement Instrument, Patient reported outcomes, Psychometrics, Systemic lupus erythematosus (SLE)

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Session Information

Date: Sunday, November 7, 2021

Session Title: Measures & Measurement of Healthcare Quality Poster (0623–0659)

Session Type: Poster Session B

Session Time: 8:30AM-10:30AM

Background/Purpose: Medication nonadherence is common in SLE and leads to increased hospitalizations, morbidity, and mortality. To better recognize nonadherence and address adherence barriers, there is a need for a validated and easily implemented tool. Based on our prior mixed-methods results and literature review, we adapted the Domains of Subjective Extent of Nonadherence (DOSE- nonadherence) questionnaire, a previously validated (in patients with hypertension and hepatitis C) self-reported measure of extent of nonadherence and reasons for nonadherence, to better illuminate nonadherence in SLE. This study aimed to refine and assess the validity of the DOSE-nonadherence in the context of SLE.

Methods: We refined the DOSE-nonadherence questionnaire through cognitive interviewing with SLE patients recruited from an academic lupus clinic and feedback from six lupus clinic rheumatologists. The instrument was then administered to patients taking any oral SLE medications. To assess its validity, we compared the results of the refined DOSE-nonadherence questionnaire to the Beliefs about Medicines Questionnaire (BMQ), the Medication Adherence Self-Report Inventory (MASRI), an existing self-reported adherence, medication possession ratio (MPR) based on pharmacy refill data, and available HCQ blood levels.

Results: Sixteen patients (median age 43, 100% female, 50% Black) participated in cognitive debriefing interviews to refine the DOSE-nonadherence. The refined DOSE-nonadherence was administered to 99 patients (median age 50, 96% female, 42% Black, 33% < college education, 55% married or cohabiting, 51% < $50K annual household income, 44% on Medicaid/Medicare). Of these, 85% were prescribed HCQ, 31% MMF, 14% AZA, 12% MTX, 1% LEF, and 5% belimumab.

Forty-four percent of patients reported nonadherence based on the refined DOSE-nonadherence. The extent of nonadherence score was highly correlated with MASRI (r=0.60) and HCQ blood levels (r=-0.73) and moderately correlated with HCQ MPR (r=-0.48), demonstrating convergent validity. The correlation between extent of nonadherence and BMQ was small (r=-0.26-0.36), demonstrating discriminant validity (Table 1).

Nonadherent patients reported on average 3.5 [IQR 1-6] reasons for nonadherence. The most common reasons were busyness and forgetting (n=25), physical fatigue (n=19), pill fatigue (n=15), feeling well (n=12), irregular schedule (n=11), and noticing no difference when skipping a dose (n=10).

Conclusion: Our results support the validity of the DOSE-nonadherence in assessing extent and reasons for nonadherence among SLE patients. In comparison to the MASRI, the DOSE-nonadherence helps identify reasons for nonadherence. This instrument can be used to identify, rigorously study, and guide the development of interventions to target the most common reasons for nonadherence in SLE.

Table 1. Construct validity correlating the refined DOSE-nonadherence measure of the extent of nonadherence with subjective and objective measures of adherence and the BMQ.


Disclosures: K. Sun, None; A. Eudy, NIH NCATS Award Number 1KL2TR002554, 5, Pfizer, 5, Exagen, 5; D. Anderson, None; R. Sadun, None; L. Criscione-Schreiber, None; J. Doss, Pfizer, 5; J. Rogers, Exagen, Inc, 5; T. Coles, Merck, 5; C. Volis, None; M. Clowse, UCB Pharma, 2, Pfizer, 5, GSK, 2, 5.

To cite this abstract in AMA style:

Sun K, Eudy A, Anderson D, Sadun R, Criscione-Schreiber L, Doss J, Rogers J, Coles T, Volis C, Clowse M. Validation of a Self-reported Measure of Extent and Reasons for Nonadherence in SLE [abstract]. Arthritis Rheumatol. 2021; 73 (suppl 9). https://acrabstracts.org/abstract/validation-of-a-self-reported-measure-of-extent-and-reasons-for-nonadherence-in-sle/. Accessed February 2, 2023.
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