Improving Self-Management in PKU Patients
Author Information
Author(s): Amber E. ten Hoedt, Carla E.M. Hollak, Carolien C.A. Boelen, N. Ada P. van der Herberg-van de Wetering, Nienke M. ter Horst, Cora F. Jonkers, Frits A. Wijburg, Annet M. Bosch
Primary Institution: Academic Medical Center (AMC), University of Amsterdam
Hypothesis
Can increased self-management of PKU patients and their parents be achieved by providing direct online access to blood Phe values without immediate professional guidance?
Conclusion
Providing PKU patients and their parents with online access to their Phe values is feasible, safe, and well-received.
Supporting Evidence
- Patients and/or parents expressed high satisfaction with the online management system.
- No significant differences in mean Phe values or sampling frequency were found between the study and pre-study periods.
- The online system allowed patients to take more control over their dietary management.
Takeaway
This study shows that letting PKU patients and their parents see their blood results online helps them manage their condition better and they like it.
Methodology
A randomized controlled trial with 38 patients aged 1 year and older, comparing online access to Phe values with usual care over 10 months.
Limitations
The study did not show a significant increase in compliance with dietary management despite high satisfaction with the online system.
Participant Demographics
Group 1 had 22 patients (7 males, 14 females) with a mean age of 15.0 years; Group 2 had 16 patients (7 males, 9 females) with a mean age of 10.9 years.
Digital Object Identifier (DOI)
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