Finger Prick to Finger Tip: Use of Mobile Phone Technology to Send PKU Blood Results

Area of Science:

• Metabolic Disorders
• Health Informatics
• Patient Management

Background:

• The National Centre for Inherited Metabolic Disorders (NCIMD) manages approximately 120 phenylalanine (Phe) levels weekly.
• A review indicated only 52% of Phe results were within the target range, suggesting a need for improved management.
• Managing phenylketonuria (PKU) requires consistent monitoring of Phe levels.

Purpose of the Study:

• To develop and evaluate a novel texting system for communicating Phe levels to PKU patients.
• To assess the system's impact on dietetic efficiency, patient satisfaction, and clinical outcomes.
• To determine the cost-effectiveness and time savings associated with the PKU texting system.

Main Methods:

• Collaboration between ICT, metabolic laboratory, and dietitians led to the development of a PKU texting system.
• The system was piloted and then offered to PKU patients over 2 years old.
• Patient demographics were matched with mobile numbers for secure communication via a web portal and SMS service.
• A patient survey in 2017 assessed satisfaction and perceived impact on dietary compliance.

Main Results:

• The PKU texting system is currently used by approximately 290 patients/families.
• Patient surveys showed high satisfaction (87% excellent/very good) and perceived time savings (94%).
• Over 21 months, the system resulted in savings of €3,275 and 580 hours of dietetic time.
• No significant effect on Phe levels or sampling frequency was observed two years post-implementation.

Conclusions:

• The PKU texting system is a highly effective quality improvement initiative for enhancing communication and efficiency in managing PKU.
• The system demonstrates significant time and cost savings for dietetic services.
• While improving operational efficiency, the system's impact on direct clinical outcomes (Phe levels) requires further investigation.