Post on 02-Nov-2019
THE CONTINUITY CLINICS – IMPROVING
LONG-TERM FOLLOW-UP CARE AND
STRENGTHENING THE INFRASTRUCTURE
OF NEWBORN SCREENING IN THE
PHILIPPINES
Maria Melanie Liberty B. Alcausin, MDPediatrician-Clinical GeneticistNewborn Screening Reference CenterUniversity of the Philippines-Manila
PHILIPPINE SNAPSHOT
• Population 100.699M (2015)
• Land Area 300,000 km2
• Median age 23
• Live births 2.4 M
• Total fertility rate (per woman) 3
• World Bank income classification lower middle
RO 2 Cagayan Valley
RO 1 Ilocos
RO 3 Central Luzon
CAR
NCR
RO 4a CALABARZON
RO 4b MIMAROPA
RO 5 Bicol
RO 6 Eastern Visayas
RO 7 Central Visayas
RO 8 Eastern Visayas
RO 9 Zamboanga Peninsula
RO 12 SOCKSARGEN
RO Caraga
DOH ARMM
RO 11 Davao
RO 10 Northern Mindanao
31
1996
24 hospitals in Phil. form
the NBS Study Group
DOH adopts NBS as a program
1999
2004
Newborn Sreening Act
Inclusion in PhilHealth Package
2006
2008
1,000,000 babies screened
NBS IN THE PHILIPPINES
1997First NBS Center
Expanded NBS
2014
J Inherit Metab Dis 2007;30:490-506Acta Medica Philippina 2009;43(2):9-14
Enactment of the RA 9288
(April 6, 2004)
Signing of theImplementing Rules and
Regulation of RA 9288
(October 5, 2004)
• Opportunity for every baby born in the Philippines to undergo newborn screening
Research
Pres Proclamation
Newborn Screening Law
90% Insurance Coverage
100% Insurance Coverage
Landmarks in the Landmarks in the Philippine Newborn ScreeningPhilippine Newborn Screening
Looking beyond the coverage…
Components of National Comprehensive Newborn Screening System
Follow-up
Screening
Diagnosis
Management
Quality
AssuranceEDUCATIONEDUCATION
RA 9288Implementing Rules and Regulations
• Section 13
The DOH being the lead agency…. shall:
“Ensure that a network of facilities for referral
and management of all positive cases is established,”
“Develop referral centers and identify referral
teams in strategic areas for referral and management
of patients with any of the disorders.”
NSC - VISAYAS
NSC – MINDANAOSouthern Philippines Medical Center
(CHD 9,10,11,12, ARMM and CARAGA)
NSC - CENTRAL LUZONAngeles University Foundation
Medical Center(CHD 1,2,3 and CAR)
NSC – NIHUP Manila
(CHD 4B, 5 and NCR)
Newborn Screening Centers
NSC – VisayasWest Visayas State University
Medical Center(CHD 6,7,8)
Future NSCs
NSC – Southern LuzonDaniel Mercado Medical Center
(CHD 4A)
Scenario for Long Term Care
The long term care of patients with confirmed diagnosis
is the responsibility of the primary physician
(pediatrician/family physician/general physician).
Follow-up Rates by the NSCs (until 2014)
TOTAL
2,746
997
36.3%
2006 Reunion of saved babies
Outcome Congenital Hypothyroidism
SUBJECTS
86 CH patients identified through newborn screening
between July 1996-December 2008
OUTCOME PREVALENCE (95% CI)
•poor control of disease 63%
•stunting 24%
•neuro-developmental delay 17%
Estrada SC, Navarro JO, Cordero CP, Padilla CD. Early Diagnosis and Specialist Care in the Management of Congenital Hypothyroidism.
Acta Medica Philippina. 2011. 45 (4): 40-45.
Challenges
• Geography
• Poverty
• Access to health care
Ratio of doctor to patient 1:33,000
Few subspecialists
8 Clinical Geneticists
3 Metabolic Physicians
23 Pediatric Endocrinologists
Establishment ofNewborn Screening Continuity Clinics
Newborn Screening Centers NBS Continuity Clinics
NBS Continuity Clinic Team
• Encourages family to maintain relationship with
Continuity Clinic to ensure continuous and effective
care.
• Monitors compliance with treatment (facilitate
referral to appropriate sub-specialists, therapists,
nutritionists).
• Reinforces schedule of follow-up appointments and
work-up endorsed by the subspecialist.
NBS Continuity Clinic Team
• Provides follow-up counselling and anticipatory
guidance to the family.
• Provides continuing education about the condition
to the families and the health professionals.
• Set up patient/family support groups
• Coordinates with DOH RO in patient recall (lost to
follow up cases).
Continuity clinics
• Government hospital identified by DOH mostly training hospitals
• Under the Department of Pediatrics
• Part-time pediatrician and full-time nurse
• Support from ROs, NSCs, NSRC, Local Government even NGOs
• Make use of existing programs of the government
LA UNIONLA UNION
CAGAYANCAGAYAN
PAMPANGAPAMPANGA
MANILAMANILACAVITECAVITE
▪Ilocos Training and Regional Medical
Center, Region 1
▪Cagayan Valley Medical Center, Region 2
▪Jose B. Lingad Memorial Regional Hospital,
Region 3
▪Baguio General Hospital and Medical
Center, CAR
▪Philippine General Hospital, NCR
▪Gen. Emilio Aguinaldo Memorial Hospital,
CALABARZON
▪Bicol Regional Training and Teaching
Hospital, Region 5
▪West Visayas State University Medical
Center, Region 6
▪Vicente Sotto Memorial Medical Center,
Region 7
▪Eastern Visayas Regional Medical Center,
Region 8
▪Zamboanga City Medical Center, Region 9
▪Northern Mindanao Medical Center, Region
10
▪Southern Philippines Medical Center,
Region 11
▪Cotabato Regional Medical Center, Region
12
CEBUCEBU
ZAMBOANGAZAMBOANGA
CAGAYAN DE OROCAGAYAN DE ORO
DAVAODAVAO
BAGUIOBAGUIO
ALBAYALBAY
ILOILOILOILOLEYTELEYTE
COTABATOCOTABATO
Continuity Clinic MAP
14 Continuity Clinics in operation
Anticipated Referrals
• The institution should have:
• Neonatologist
• Pediatric-Hematologist
• Genetic Counselor
• Tele consultation with other specialists
• Geneticist/Metabolic Physician
• Pediatric endocrinologist
• Pulmonologist
Tele-Consultation
Geneticist No 1
Geneticist No 2
Follow-up Rates per Region through Continuity Clinics(as of August 2016)
(%) 88.1 80.0 87.
0
66.1 89.4 86.4 87.1 96.
3
71.3 91.7 100.0 77.
6
76.7 53.5 91.2 59.7 90.0
TOTAL
2,450
1,960
80.0%
Recall Rates per Disorder in all Continuity Clinics (as of August 2016)
Follow up
Rate (%)
76.2 79.0 94.6 90.0 100 95.1
TOTAL
2,450
1,960
80.0%
Objectives
•To ensure that children diagnosed with CH and CAH, and referred and deemed eligible by the NBS Continuity Clinics -be seen and managed by a PSPME accredited pediatric endocrinologist
•To strengthen partnership between the PSPME and the NBS program
Collaboration with Philippine Society of Pediatric Metabolism and Endocrinology (PSPME)C
olla
bo
ratio
n w
ith P
SP
ME
Future plans
• Assessment beyond the follow-up rates (neurodevelopmental assessments, function, etc)
• A clinic for every region � one in every province
Conclusions
� Assessment and re-assessment of all components of the program is vital
�Follow-up care improved with a separate dedicated clinic
�Follow up rate more than doubled - from 36.3% to 80.0%
�Tapping existing programs to assist in delivery of care
SALAMAT!