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!