Background/Purpose:  Medication adherence in rheumatoid arthritis (RA) patients can be influenced by their previous experiences with medication side effects.  Negative experiences may lead patients to become fearful towards medications, increasing rates of non-adherence and rejection of physician recommendations to add medication therapy.  To better understand how patients’ experiences of adverse drug reactions affect perceptions of medication risk and subsequent decisions to take recommended medications, we conducted an analysis of patient narratives of their experiences with adverse drug reactions due to medications for RA.  Our goal was to describe features of RA patients’ experiences of medication side effects, and to compare narratives of patients who self-report discontinuing medications on their own or rejecting physician recommendations for medications (‘Non-adherent’ group) with narratives of patients who do not (‘Adherent’ group).

Methods:  A qualitative analysis was conducted of transcripts from semi-structured interviews with 20 RA patients.  Interviews were from a pilot study testing patient education materials for usage in the RA Comparative Effectiveness Research (RACER) registry (n = 1,000).  Subjects were recruited from RACER enrollees treated at a participating clinic. During interviews, subjects were asked whether they had ever experienced side effects due to their medications for RA, and if so, to describe the side effects.  Comments of all subjects describing any experiences of side effects were analyzed.  A coding scheme was developed to index statements about: 1) medications in general, 2) the side effects experienced and relevant medications, 3) the patient-provider relationship, and 4) RA and treatment related information.  The first 2 authors coded the interview transcripts separately, then discussed and reached a consensus on assignment of codes for each transcript. Codes for patients in the Non-adherent group were compared to the Adherent group.

Results:  Fourteen of 20 patients reported side effects.  The inter-observer agreement was high (mean kappa = 0.90).  Among the 14 subjects with side effects, subjects in the Non-adherent group (n = 6) and Adherent group (n = 8) reported a similar mean number of side effects which they perceived as important (2.83 vs. 2.13) and non-important (0.67 vs. 1.25). However, patients in the Non-adherent group were more likely than patients in the Adherent group to discuss fear (66.7% vs. 12.5%), unacceptability of side effects (66.7% vs. 25%), unsatisfactory resolution of side effects (66.7% vs. 25%), and negative aspects of medications (83.3% vs. 25%).

Conclusion:  Fear, viewing side effects as unacceptable, dissatisfaction with how side effects were resolved, and negative perceptions of medications played a more central role in the experiences of patients who discontinued medications on their own or rejected physician recommendations, compared to patients who did not.  This suggests that interventions to address these patient concerns may be critical for improving patient adherence to medications.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/rheumatoid-arthritis-patients-experiences-of-medication-side-effects-and-subsequent-decision-making-about-medications/