Bridging the gap in access to filter paper monitoring in patients with phenylketonuria - a Medical Nutrition Therapy for Prevention (MNT4P) program initiative

ABSTRACT

Background: Filter paper (FP) or dried blood spot testing is the preferred method of monitoring blood levels of phenylalanine and tyrosine for patients diagnosed with phenylketonuria (PKU) in the state of Georgia. This cost effective and convenient at-home approach simplifies the nutritional assessment and management of patients with PKU and lessens the burden on patients and caretakers. Emory and a local specialty laboratory had a long-standing contract for FP testing, which included patient insurance and grant billing. When this laboratory abruptly ended FP testing in September 2020, an emergent alternative plan became essential to prevent potential disruptions in patient care while working on a sustainable solution for PKU monitoring, especially given the ongoing COVID-19 pandemic. Method(s) Emory's in-house laboratory was not contracted with outside laboratories to process FP testing and bill insurance. To mitigate any delays in FP testing, the MNT4P program conducted a vendor search and selected ARUP Laboratories to perform PKU FP testing. Eligible patients included those referred, enrolled, and consented to the MNT4P program. To streamline the FP submission process, customized FP cards and business reply envelopes were developed and distributed in collaboration with PerkinElmer, Emory Mail Services and the United States Postal Service. Patient outreach efforts were facilitated through email campaigns, MNT4P website updates, and in collaboration with Georgia PKU Connect. Result(s) 95 patients were referred to MNT4P program for FP paper monitoring. During the 4-month period, a total of 239 FPs were collected from patients with PKU and processed with corresponding results reported to Emory Clinic, allowing registered dietitians to continue nutrition management without disruption. Once the patient-centered business prototype was established, FP testing was successfully transferred from the MNT4P program to Emory's inhouse laboratory. FP testing is now a part of Emory's test catalog, and results are available to providers through electronic health records. Conclusion(s) The MNT4P program successfully worked with Emory's in-house laboratory to develop a sustainable solution for FP monitoring. It prevented interruption in long-term follow up of patients with PKU. MNT4P continues to be the payor of FP tests for uninsured and underinsured patients.Copyright © 2022 Elsevier Inc. All rights reserved.