Background/Purpose: An estimated 11% to 33% of persons taking methotrexate for rheumatoid arthritis (RA) are reported to be at least moderately intolerant to this medication. The published literature has largely measured methotrexate intolerance using a scale composed of four domains: abdominal pain, nausea, vomiting and behavioral symptoms. These symptoms largely ignore the definition of “intolerance” or the “unwillingness or refusal to tolerate or respect opinions or beliefs contrary to one’s own”. As such, the patients’ perspective is not captured. The purpose of this study is to use qualitative methodologies to describe methotrexate intolerance from the adult patient with RA’s perspective.

Methods: We conducted semi-structured audio-recorded individual interviews with 14 adult English-speaking patients who have a rheumatology health-care provider confirmed diagnosis of RA, and who had been prescribed, were taking, or had ever taken oral or subcutaneous methotrexate. We identified 489 labels for common words or phrases or codes during line-by-line coding which were categorized using constant comparative analysis and then collapsed into three central themes.

Results: Findings from the conducted interviews suggest that methotrexate intolerance is a construct conceptualized from three themes: Beliefs about the Risk of Methotrexate, Beliefs about the Benefits of Methotrexate, and Beliefs about the Threat of RA. The complex beliefs about methotrexate involved both perceived risks and benefits which resulted from knowledge obtained from sources with varying perceived value such as the Internet, others with RA, or their health care provider. The experiences of trusted peers with RA and the relationship with their health care provider were influential in the decision to tolerate methotrexate. The amount of information and timing in which to participants’ sought information varied.

Participants also described beliefs about the threat of RA which often resulted from personal experiences with pain and difficulty functioning or observing the experiences of other with RA. Patients often reported the desire to avoid “being crippled” or requiring the use of assistive devices including a wheel chair. The belief in the perceived benefit of methotrexate, which was often improved functioning in activities of daily living, and threat of the RA hindering this functioning often was a stimulus to tolerate perceived risks or to take methotrexate despite known risks (e.g., hair loss and nausea).

Conclusion: Findings from this study suggest that intolerance to methotrexate involves a complex belief system where patients with RA weigh beliefs about risks and benefits of methotrexate alongside beliefs about the threat of RA.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/methotrexate-intolerance-a-qualitative-descriptive-study-of-the-adult-rheumatoid-arthritis-patients-perspectives/