Measuring family management of transplant tasks: the transplant responsibility questionnaire.

Little is known about how parents and youth perceive their roles in post-transplant management and how this relates to post-transplant adherence. The goals of this study are to (1) describe a new measure, the TRQ, (2) to describe parent and child performance on the TRQ, and to (3) determine the relationship between the TRQ and adherence. We hypothesized that older youth would describe higher post-transplant self-care behaviors, parents would underestimate youth self-care, and greater parent involvement would be associated with better adherence. Participants included 59 parent-child dyads. Inclusion criteria included: (i) youth aged 7-18 yr and (ii) at least three months post-kidney or post-liver transplant. Parents and youth completed the TRQ, and adherence was measured by s.d. of sequential immunosuppressant blood levels. Youth perceived greater levels of self-care than their parents perceived. Older youth reportedly engaged in more self-care than younger youth. Less than 25% of the sample was non-adherent, and non-adherence was unrelated to performance on the TRQ. The TRQ may have utility as a clinical tool to address areas for improvement in youth self-care. The high degree of parental involvement likely explains the high degree of adherence in this sample.