Background/Purpose:  Methotrexate (MTX) remains an effective and commonly used disease modifying anti-rheumatic drug (DMARD) for the treatment of Juvenile Idiopathic Arthritis (JIA). Approximately half of the children taking MTX will experience MTX intolerance, that is nausea, vomiting, anticipatory or associative nausea/vomiting. While we have information about MTX intolerance from the perspective of parents and older children, to date there are no studies focused on school-age children’s perception of MTX intolerance and its impact on daily life. School-age children have decisions made for them, however they remain experts of their own care and their input is essential for collaborative care and management. The purpose of this study was to explore school-age children’s perceptions of MTX intolerance, how MTX intolerance impacts their daily lives and how they manage MTX intolerance.

Methods: An interpretive descriptive design was used with purposive sampling to explore the perceptions of school-age children with JIA experiencing MTX intolerance. All children were interviewed using semi-structured interviews that incorporated a storyboard technique. The storyboard was in the shape of a house with 4 rooms. Children were provided with a variety of felt pieces depicting family members, pets, toys and furniture. Medical play items were also provided, including a syringe, needle, alcohol swab and pill bottle. The storyboard activity allowed the participants to begin to tell their stories about MTX intolerance by visually setting up and displaying their home environment, including the room in which they took their MTX, and to describe who was involved in their MTX administration. The storyboard facilitated the semi-structured interview in which children continued to describe their experience of MTX intolerance. Interview and observational data were collected and analyzed using qualitative inductive content analysis.

Results:  Twelve children, aged 6-12 years participated in the study. Interviews lasted an average of 35 minutes. All children enjoyed using the storyboard. Three themes were identified that captured the children’s experiences: (1) Children’s perceptions of methotrexate intolerance (including descriptions of anticipatory and associative nausea): “No kid likes taking methotrexate”. (2) Children’s strategies for managing MTX administration: ”When I’m going to take my MTX…I’m going down the stairs in slow motion”. (3) Working hard to live with MTX intolerance: “The next day, I’m happy because it’s another week” [before MTX again].

Conclusion: School-age children are able to clearly articulate their experience of MTX intolerance. Findings highlight the importance of exploring young children’s perceptions of intolerance when developing clinical strategies to manage care. Results will be used to explore more effective ways to prevent and manage MTX intolerance.