Background/Purpose: MTX, a first line DMARD, commonly used to treat adolescents and young adults (AYA) with rheumatic diseases (RD), can be hepatotoxic and teratogenic. AYA with RD may face challenges accessing and understanding accurate, reliable information regarding the potential harmful interactions between their medications (e.g., MTX) and certain lifestyle choices they make. The objective of this study was to determine the educational experiences, level of knowledge and informational needs and preferences of AYA taking MTX for RDs, specifically regarding alcohol use and contraception.

Methods: AYA 16-25 years old currently or previously taking MTX completed an anonymous online questionnaire co-designed by AYAs with RD. Links to questionnaires were shared in rheumatology clinics and through patient advocacy groups on social media.

Results: Of 43 respondents, 77% were female, 65% were 19-21 years of age, and 80% had a diagnosis of JIA. In assessing respondent knowledge of MTX, 21% did not know that MTX is a DMARD, 53% were not aware that MTX takes 2-4 months to achieve full effectiveness, 28% did not know that MTX can cause liver damage, and 86% agreed that alcohol should be avoided when taking MTX. The majority (79%) stated that contraception should be used if a female is taking MTX, compared to 64% for a male.

In assessing respondent behaviours, 37% report drinking an average of 1-5 alcoholic drinks weekly, 32% reported drinking ≥3 alcoholic drinks at least once/week, 56% reported that their rheumatologists ask them about their alcohol use at every visit, 21% reported discomfort discussing alcohol use with their rheumatologist, and 18% inaccurately reported alcohol use to their rheumatologist. Past or present sexual activity was reported by 56% of respondents, 93% of which report using contraception. Discomfort discussing sexual activity with their rheumatologist was reported by 28%, and 10% inaccurately reported sexual activity to their rheumatologist. Approximately one quarter were unaware that there is a risk of birth defect while taking MTX.

Respondents reported receiving information about their RD from their rheumatologist/healthcare provider, the internet, and educational pamphlets, which were also their preferred methods of receiving information. One third reported not having access to accurate information regarding managing MTX side effects.

Conclusion: Despite approximately half of AYA reporting drinking alcohol weekly and being sexually active, results suggest almost half of rheumatologists do not routinely discuss these at-risk behaviours with their patients on MTX. Approximately one quarter of respondents reported feeling uncomfortable and/or not being honest with their rheumatologist in discussing alcohol use and sexual activity. Approximately one quarter of AYA report not having access to accurate resources regarding MTX side effects and safe alcohol use. This study identified educational opportunities about MTX for AYAs which can be shared by their rheumatologist/healthcare provider and/or educational pamphlets.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/adolescents-and-young-adults-taking-methotrexate-knowledge-and-behaviours/