by Kathleen Mendoza
Long-term follow-up clinics are set up all over the country to ensure the best possible outcome for NBS confirmed patients. In achieving this goal, these clinics often have to deal with various obstacles such as financial difficulties of patients and patients living in geographically isolated and disadvantaged areas leading to communication problems. While there are such encounters, it does not stop these clinics from providing the needed management for this group of patients.
Such is the case for the Western Visayas Medical Center Newborn Screening Continuity Clinic (WVMC NBSCC), which is in charge of the long-term follow-up care of one MSUD patient. Check-ups at the continuity clinic is a huge challenge for the patients since they live in one of the barangays considered as a GIDA area of San Dionisio, Iloilo. It would take almost an hour for the patient to reach the town proper and travel another 3-4 hours to the city where the continuity clinic is located.
The parent’s financial capacity presents another challenge in the patient’s care. With an unstable source of income—with the father as a laborer—a family of 5 can barely manage to feed themselves, let alone spend for transportation to the clinic.
Communication problems add to the hurdles encountered in the
management of the patient with a weak network signal in their area. The patient’s mother sometimes makes use of the “PESO WIFI” near their area in order to communicate with the continuity clinic nurse.
To address these challenges, the WVMC NBSCC coordinated with various NBS partners. For the recall and tracking of the patient, assistance from the San Dionisio Rural Health Unit was requested, as well as transportation services to the continuity clinic. Likewise, assistance from the West Visayas State University NBSCC was requested for the coordination of the Leucine level monitoring at Sara District Hospital.
In the course of the patient’s management, all of the obstacles compounded and greatly affected the patient, as the mother became non-compliant with the prescribed management. Hence, the WVMC NBSCC referred the patient’s case to the Center for Human Genetics Services Social Worker and to the Department of Health Western Visayas Center for Health Development (DOH WV CHD) for assistance. The social worker from the Center for Human Genetics Services conducted an interview with the mother and prepared a case report for the mother to use in requesting financial aid from various agencies while plans of conducting a home visit to the patient’s residence were formulated with the DOH WV CHD.
February 10, 2025 – The WVMC NBSCC materialized the plans together with the DOH WV CHD, West Visayas State University Medical Center NBSCC, Iloilo Provincial Health Office, and Iloilo Province Hospital Management Office collaborating in the conduct of the home visit to the patient with the assistance of the San Dionisio Local Government Unit. A courtesy visit at the Local Chief Executive’s (LCE) Office and the Municipal Health Officer was made, and the team was endorsed to the barangay officials, who in turn assisted the NBS team for the visit. Going to the patient’s residence entailed crossing a couple of streams from the barangay proper through the Municipality’s Responder Vehicle (MDRRMO), and a 2-kilometer hike up the mountain, crossing cornfields and streamlets. During the visit, the patient was assessed, and the parents were counseled by the whole team to adhere to and comply with the treatment regimen prescribed for the patient.
In addition to the home visit, the whole team conducted a Patient Endorsement Activity in the San Dionisio Rural Health Unit and Sara District Hospital in which the patient’s case was endorsed to the NBS team of the respective facilities, and was oriented on the monitoring needs of the patient.
Truly, there is no mountain of obstacles high enough to keep the WVMC NBSCC – combined with the assistance of various NBS partners – from conquering the hurdles faced in the management of patients. These efforts bore fruit, with the mother beginning to comply again with the treatment regimen.
