Rheuminating About Alcohol and Drugs? Assessing the Informational Needs of Adolescents and Young Adults with Chronic Rheumatic Disease

Objectives Providing information to adolescents and young adults (AYA) with rheumatic diseases about the use of alcohol, recreational drugs, and reproductive health and their impact on disease and medications is critical to ensuring they can make educated decisions about their health and behaviors. We aimed to understand the informational needs of AYAs and their preferences for how (eg, websites, pamphlets, etc.), when (eg, starting age) and how frequently (eg, every visit, annually) they would like to receive this information. Methods A questionnaire co-developed with patient partners was circulated to 16-22 year olds in rheumatology clinics and by social media. Participants rated how informed they were on alcohol and recreational drug consumption, and reproductive health, as it related to their disease and medications. Responses were summarized using descriptive statistics. Respondents were then invited to participate in a virtual focus group facilitated by a Child Life Specialist and patient partner. Focus group scripts were analyzed using inductive thematic analyses. Results Of 93 survey responses, 67 completed the entire questionnaire. Most respondents were female (80.6%), 16-18 years old (55.9%) and diagnosed with JIA (67.7%). The majority felt poorly informed on how to manage symptoms after drug/alcohol consumption (68%/58%), how different types of recreational drugs/alcohol interact with medications (67%/54%), and considerations when becoming a parent (47.8%). Fewer respondents felt poorly informed about short- (37.7%/24.4%) and long- (36.2%/23.1%) term effects of recreational drug/alcohol consumption. Participants preferred informational resources were, in order, websites (70.2%), healthcare team (49.7%), pamphlets/brochures (39.2%), podcasts (27.6%) and parent/caregiver (18.5%). Focus group participants (8 females, 3 males) generally felt uninformed about how recreational drug and alcohol consumption, and reproductive health interacts with their medications and rheumatic disease (Table 1). Females preferred to receive information through social media/websites and males wanted an online collection of resources to rate and provide comments, while both valued learning from lived experiences. When asked which topics should be prioritized in educational materials, the top 3 were effects of alcohol on medications, effects of medications on reproductive health, and limits of consuming alcohol on medication and with rheumatic disease. Their preference of when and how often they wanted to receive information was age 14-16 years, with discussions occurring at every clinic visit. Table 1: Focus Group Quotes Conclusion The majority of AYA felt poorly informed about potentially harmful activities and expressed desire for more education. Preferred educational resources included social media, resource databases, and stories of lived experiences.