Impact of geographic access to care on compliance and metabolic control in phenylketonuria

Abstract

Objective: To study the impact of geographic access to care on metabolic control and compliance in phenylketonuria (PKU).

Study design: Phenylalanine (Phe) levels and number of samples obtained were abstracted from a data base of 76 patients age <21 years and compared for age, sex, and distance to clinic. Levels and number of samples were compared to the clinic guidelines for age.

Results: There was a strong positive correlation between age and Phe levels in adolescents and young adults while age and number of samples submitted were negatively correlated. There was not a significant correlation between Phe levels and distance to clinic, nor was there a significant difference in the Phe levels by distant categories (Denver metro, Front Range, distant area). However, there was a decrease in number of samples sent compared to clinic guidelines by distance, with patients residing in distant areas (>100 miles) sending significantly less samples.

Conclusion: Geographic access to care does not impact control of Phe levels, but it does affect the number of monitoring samples sent to the clinic. Age groups of adolescents and young adults have a strong impact on both control of Phe levels and number of monitoring samples compared to clinic guidelines.