La mascota program presentation for pogo
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Transcript of La mascota program presentation for pogo
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.