Incomplete adherence after pediatric heart and heart-lung transplantation

Poor adherence to treatment after organ transplantation is life threatening. Clinical experience indicates that failure to adhere to the medical regimen after pediatric heart or heart-lung transplantation is more common than might be anticipated. This is the first empirical study of adherence in this population.

The subjects were 53 children and adolescents (mean age 10.3 years) who underwent transplantation and were followed up for 12 months after transplantation. At each attendance blood levels of cyclosporine were measured and medical diaries checked. For children who had undergone heart-lung transplantation, serial measures of respiratory function were obtained, both at home and in the laboratory. Levels of adherence to the immunosuppressive therapy and completion of the medical diary were determined on the basis of prior operational definitions.

Satisfactory adherence to medication and satisfactory completion of the diaries were found in 37 children (70%). Satisfactory adherence to medication but unsatisfactory completion of the diaries were found in 11 children (21%). There was poor adherence to medication in 5 other children (9%) regardless of whether the diary was satisfactorily completed. Independent variables associated with poor adherence to medication were heart-lung as opposed to heart transplantation, one-parent or blended families, and family adjustment.

Nearly one third of the sample showed unsatisfactory adherence to the treatment regimen. This relatively high prevalence indicates the importance of close monitoring of adherence. The identification of family characteristics as risk factors indicates a need for more intensive psychoeducational family counseling in the 12 months after transplantation.