Volitional and accidental nonadherence to pediatric inflammatory bowel disease treatment plans: initial investigation of associations with quality of life and disease activity.

OBJECTIVE To examine rates of volitional and accidental nonadherence, and explore potential differential associations of each with disease activity and quality of life (QOL), in pediatric patients with inflammatory bowel disease (IBD). METHODS One hundred families (100 parents, 78 adolescents) recruited from a large Midwestern children's hospital reported on the child's medication nonadherence and QOL. Healthcare providers supplied disease activity ratings. RESULTS Most adolescents (73.1%) and parents (70.1%) reported engaging in accidental nonadherence, whereas a smaller group (35 and 30%, respectively) reported engaging in volitional nonadherence to the child's prescribed medication regimen. Frequency of accidental nonadherence was unrelated to disease activity or any specific QOL area examined, whereas greater frequency of volitional nonadherence was associated with greater disease activity and poorer parent reported psychosocial QOL. CONCLUSIONS Nonadherence and the relationship with disease severity and QOL may be more complex for children with IBD than understood through previous work.