La Mascota Pediatric Hemato-oncology Program for the treatment of Childhood Cancer in Nicaragua

Dr. Roberta Ortiz, MDPediatric Hemato-oncology DepartmentLa Mascota Children’s HospitalManagua, Nicaragua

NicaraguaNicaragua•Population: 5,200,000

•Population < 15yrs: 44%

•Area:130,668 km2

•GIN per capita: US$ 600

• 77.8% lives with <2US$/day

• Population living in extreme poverty: 17.2%

• Adult Literacy Rate: 64%

• <5MR: 32./1,000

• Childhood Cancer:196 cases

UNICEF 2003∕ CEPAL 2001/Pediatric Oncology Department Data Base

La Mascota Program Historical AspectsLa Mascota Program Historical Aspects

Before 1986 lack of adequate Before 1986 lack of adequate infrastructure to treat childhood infrastructure to treat childhood cancer in Nicaragua.cancer in Nicaragua.

In 1986 the program was developed In 1986 the program was developed with help of Italian (Monza) and Swiss with help of Italian (Monza) and Swiss Institutions (Bellinzona).Institutions (Bellinzona).

RationaleRationale La Mascota Program was based on La Mascota Program was based on

the belief than an attempt to reduce the belief than an attempt to reduce the mortality gap from cancer in the mortality gap from cancer in Childhood between developed and Childhood between developed and less developed countries should less developed countries should become an integral part of the care become an integral part of the care and research activity of a hemato-and research activity of a hemato-oncology department of developed oncology department of developed countries and not simply an exercise countries and not simply an exercise of solidarity.of solidarity.

G. Masera, F. Cavalli, F. Baez et al. North-South twinning in paediatric haematologyoncology: La Mascota Programme, NicaraguaLancet 1998;352:1923-1926

Aims of the ProgramAims of the Program

To developed a Pediatric Cancer Unit.To developed a Pediatric Cancer Unit.

Agreement for a cooperative global Agreement for a cooperative global

twinning program. twinning program.

To offer the best possible and To offer the best possible and

completely free of cost treatment to completely free of cost treatment to

all children with cancer in Nicaragua.all children with cancer in Nicaragua.

Challenges facedChallenges faced

1.1.Training of personnel Training of personnel

2.2.Physical structuresPhysical structures

3.3.Diagnostic facilitiesDiagnostic facilities

4.4.Antineoplastic drugs supplyAntineoplastic drugs supply

5.5.Abandonment Abandonment (adoption (adoption program)program)

6.6.Psychosocial support Psychosocial support

7.7.Delayed diagnosisDelayed diagnosis

InfrastructureInfrastructure Training of personnel:Training of personnel: 8 pediatric 8 pediatric

oncologists, 12 nurses, 9 nurse assistants, oncologists, 12 nurses, 9 nurse assistants, psychosocial team, laboratory technicians, psychosocial team, laboratory technicians, pathologist.pathologist.

Physical structure:Physical structure: 30 bed hematology- 30 bed hematology- oncology ward, Day-hospital, play room, oncology ward, Day-hospital, play room, Residence for families.Residence for families.

Chemotherapy: Chemotherapy: at the beginning provided at the beginning provided by Monza-Bellinzona, actually by by Monza-Bellinzona, actually by CONANCA , in the past year partially by CONANCA , in the past year partially by the National Ministry of Health.the National Ministry of Health.

Physical StructurePhysical Structure

 

Results AchievedResults Achieved

F . Baez, F. Fossati Bellani, F. Cavalli et al. Treatment of Childhood Wilms’ Tumor without Radiotherapyin Nicaragua. Ann Oncol 2002. 13: 944-948

F. Baez, E. Ocampo, V. Conter et al. Treatment of Childhood Hodgkin’s Diseasewith COPP or COPP-ABV (hybrid) without Radiotherapy in Nicaragua. Ann Oncol 1997.8: 247-250

64.0(2.9)

56.8(3.0)50.1(3.6)

40.5(3.8)Survival 354 pts 131 deathsEFS 354 pts 155 events

median follow-up time: 2.3 yrs

MANAGUA 2000354 patients

CORS-Managua Feb 2006

0.0

0.2

0.4

0.6

0.8

1.0

YEARS FROM DIAGNOSIS

0 1 2 3 4

Pediatr Blood Cancer, 43(4):348, 2004

Increasing number of cases.POND-La Mascota Data Base

65

94

184

194

186

224

188

186

183

168

187

151

153

124121

126105

47

48

0

50

100

150

200

250

1990

1991

1992

1993

1994

1995

1996

1997

1998

1999

2000

2001

2002

2003

2004

2005

2006

2007

Sep-08

Economic Sources to Achieve Continuity Economic Sources to Achieve Continuity

National SourcesNational Sources

1.1. CONANCA:CONANCA: provides provides US$400,000/year US$400,000/year for chemotherapy, antibiotics, special for chemotherapy, antibiotics, special exams(CT, MRI, Immuno-histochemistry, exams(CT, MRI, Immuno-histochemistry, tumor markers,etc)tumor markers,etc)

2.2. National League Against Cancer and National League Against Cancer and Leukemia.Leukemia.

3.3. CENTICENTI

4.4. Ministerio de Salud, NicaraguaMinisterio de Salud, Nicaragua

International SourcesInternational Sources

Tettamanti Foundation, ItalyTettamanti Foundation, Italy Comitato M L Verga, ItalyComitato M L Verga, Italy ABIO (Associazione Bambino in Ospedale) Monza, ItalyABIO (Associazione Bambino in Ospedale) Monza, Italy AMCA (Ayuda Medica a Centro America), AMCA (Ayuda Medica a Centro America), SwitzerlandSwitzerland Zegna Foundation, Biella, ItalyZegna Foundation, Biella, Italy Clelio Angelino Foundation, Biella, Italy Clelio Angelino Foundation, Biella, Italy Lega Italiana dei Tumori – Milan, ItalyLega Italiana dei Tumori – Milan, Italy City Councel of Alessandria, ItalyCity Councel of Alessandria, Italy Private Donation from Attilio and Piera Castellani, ItalyPrivate Donation from Attilio and Piera Castellani, Italy Program “Support a Child” , Italy and SwizertlandProgram “Support a Child” , Italy and Swizertland

St Jude Children´s Research Hospital IOP Program, USASt Jude Children´s Research Hospital IOP Program, USA A Tomorrow for Children Foundation, USAA Tomorrow for Children Foundation, USA Pediatric Oncolgy Group of Ontario (POGO), Canada Pediatric Oncolgy Group of Ontario (POGO), Canada Horizon 3000, AustriaHorizon 3000, Austria

Still Problems to overcomeStill Problems to overcome

Abandoment or Lost to therapyAbandoment or Lost to therapy(%)(%)

88 90 92 96

25

50

0

%

35

23

14

6

Psychosocial- Support Program Psychologist

Social Worker “Support a Child” Program

Residence for families

ALL- Managua-protocols2000

10

MITCHMITCH MITCHMITCH

94 99

2014

02

8

04

7

Abandonment - DiseaseAbandonment - DiseaseType of cancer Abandonment of

Therapy (%)

Acute Leukemias 11.6 %

Burkitt Lymphoma 17.6 %

Hodgkin Lymphoma 18.6 %

Wilms’ Tumor 7.7 %

La Mascota-POND Data Base

Abandonment=Social ProblemAbandonment=Social Problem

Hrs fromHrs from

Managua.Managua.# Pts# Pts ##

Lost to Lost to TherapyTherapy

%%

00 2626 11 3.8 %3.8 %

1 - 31 - 3 167167 88 4.8 %4.8 %

4 - 64 - 6 8787 1010 11.5 %11.5 %

> 6> 6 7474 1414 16.1 %16.1 %

Extreme PovertyExtreme Poverty:22/33=66.6%:22/33=66.6%(1–2 U$/day)(1–2 U$/day)

CulturalCultural: 6/33 = 18.2 %: 6/33 = 18.2 %

Religious:Religious: 3/33 = 9.1 % 3/33 = 9.1 %

Poor prognosis: Poor prognosis: 2/33 = 6 %2/33 = 6 %Analyses of causes of abandonment in ALLManagua 2000 Protocol

Actions to reduce abandonment Actions to reduce abandonment of therapyof therapy

Educating Parents and Patients.Educating Parents and Patients.

Economic Support to the families: adoption Economic Support to the families: adoption programprogram

Local Support Network.Local Support Network. Local Parents’ associations.Local Parents’ associations. Patients’ Search and rescue.Patients’ Search and rescue.

Satellite Pediatric Hemato-Oncology Clinics.Satellite Pediatric Hemato-Oncology Clinics.

Delayed DiagnosesDelayed Diagnoses Review of 294 new cases diagnosed between Review of 294 new cases diagnosed between

January 2002 to February 2003:January 2002 to February 2003:

Time from clinical presentation to diagnosis was Time from clinical presentation to diagnosis was > 3 months in 34.7%> 3 months in 34.7%

77.5% of children had more than one contact with 77.5% of children had more than one contact with a primary health center prior to referral.a primary health center prior to referral.

64% were given incorrect medical treatment before 64% were given incorrect medical treatment before obtaining diagnosis.obtaining diagnosis.

Solid tumors 51% were in advanced stage (Stage Solid tumors 51% were in advanced stage (Stage III 31%, Stage IV 20%)III 31%, Stage IV 20%)

Silva Y, Monographic Thesis 2005

Adressing The ProblemAdressing The Problem

Educational campaigns to promote early Educational campaigns to promote early detection and prompt referral:detection and prompt referral:

1.1. 2003 UNOPS-PNUD- with Italian Cooperation and 2003 UNOPS-PNUD- with Italian Cooperation and Minisitry of Health Minisitry of Health ““Promoting Early Diagnosis Promoting Early Diagnosis Project”Project”

2.2. 2005 CONANCA 2005 CONANCA “Early Diagnosis and “Early Diagnosis and Decentralization ProjectDecentralization Project

3.3. 2005 Leon´s National Autonomous University, 2005 Leon´s National Autonomous University, School of Medicine and La Mascota Children´s School of Medicine and La Mascota Children´s hospital: hospital: Training curse for pediatrics fellowsTraining curse for pediatrics fellows

Impact of Educational CampaignsImpact of Educational Campaigns

Type of Type of Pediatric Pediatric CancerCancer

Stage III-IVStage III-IV

Before 2000 Before 2000 (%)(%)

Stage III-IVStage III-IV

After 2002 (%)After 2002 (%)

HDHD 62%62% 33%33%

NHLNHL 86%86% 48%48%

Wilms’ TumorWilms’ Tumor 87%87% 60%60%

RetinoblastomaRetinoblastoma 62%62% 18%18%

RabdomiosarcomaRabdomiosarcoma 70%70% 62%62%

Arguello-Salinas. 1995/Silva . 2003 Monographic Thesis

Current ApproachesCurrent Approaches

""Early Diagnosis, reduction of Early Diagnosis, reduction of abandonment and decentralization of abandonment and decentralization of patient care at peripheral clinicspatient care at peripheral clinics"" was was launched in September 2007 with launched in September 2007 with funding by the Swiss organization AMCAfunding by the Swiss organization AMCA

Aims:Aims: to improve the treatment to improve the treatment compliance for Acute Lymphoblastic compliance for Acute Lymphoblastic Leukemia, to reduce abandonment rates Leukemia, to reduce abandonment rates and to decentralize pediatric hemato-and to decentralize pediatric hemato-oncology care at five peripheral centers. oncology care at five peripheral centers.

Activities Carried OutActivities Carried Out Training Worshops at La Training Worshops at La

Mascota Hospital (September Mascota Hospital (September 2007 through February 2008): 5 2007 through February 2008): 5 pediatricians, 7 nurses and 5 pediatricians, 7 nurses and 5 laboratory technicians were laboratory technicians were trained. trained.

194 people from primary care 194 people from primary care centers among nurses, centers among nurses, physicians and community physicians and community support personnel were trained support personnel were trained locally to promote early locally to promote early diagnoses and to contribute to diagnoses and to contribute to relocate and refer cases of relocate and refer cases of abandonment of therapy.abandonment of therapy.

Satellite ClinicsSatellite Clinics

Actually a total of 3 satellite clinics are Actually a total of 3 satellite clinics are already functioning in Matagalpa, already functioning in Matagalpa, Jinotega and Esteli administering Jinotega and Esteli administering maintenance treatment for acute maintenance treatment for acute lymphoblastic leukemia. lymphoblastic leukemia.

The other two clinics are still in process The other two clinics are still in process of development. of development.

Future ActivitiesFuture Activities

Promoting community participation in childhood cancer care Promoting community participation in childhood cancer care (UICC Grant):(UICC Grant):

To Promote and articulate the participation of the community To Promote and articulate the participation of the community organizations with parents’ associations at the five regional centers organizations with parents’ associations at the five regional centers selected to contribute to the reduction of treatment abandonment selected to contribute to the reduction of treatment abandonment and delayed diagnoses.and delayed diagnoses.

To provide training to community leaders about general aspects of To provide training to community leaders about general aspects of childhood cancer in order to race awareness on the importance of childhood cancer in order to race awareness on the importance of early diagnoses and to launch activities directed to the promotion early diagnoses and to launch activities directed to the promotion and prevention of delayed diagnoses.and prevention of delayed diagnoses.

To establish a network of communication between parents’ To establish a network of communication between parents’ association, and community organizations in order to create support association, and community organizations in order to create support groups that will contribute to the reduction of abandonment and to groups that will contribute to the reduction of abandonment and to facilitate the adherence of the children to their treatment programs.facilitate the adherence of the children to their treatment programs.

To articulate the work of peripheral clinics together with the To articulate the work of peripheral clinics together with the community organizations and parents’ associations.community organizations and parents’ associations.

ConclusionsConclusions

The twinning approach is a realistic challenge The twinning approach is a realistic challenge which shows that intellectual, organizational and which shows that intellectual, organizational and financial sources can be generated through financial sources can be generated through effective cooperation between peers.effective cooperation between peers.

Twinning programs must motivate research-Twinning programs must motivate research-minded attitude and adaptation of technology to minded attitude and adaptation of technology to local conditions.local conditions.

Childhood cancer mortality rates can be reduce Childhood cancer mortality rates can be reduce by the implementation of an effective cancer by the implementation of an effective cancer program through a twinning model.program through a twinning model.