La mascota program presentation for pogo

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Programa de cuidado de Cancer Infantil En Nicaragua desarrolado dal Departamento de Hemato-Oncologia de l'Hospital Manuel de Jesus Rivera " La Mascota" de Managua, Nicaragua

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La mascota program presentation for pogo

  1. 1. La Mascota Pediatric Hemato-oncology Program for the treatment of Childhood Cancer in Nicaragua Dr. Roberta Ortiz, MD Pediatric Hemato-oncology Department La Mascota Children’s Hospital Managua, Nicaragua
  2. 2. Nicaragua <ul><li>Population: 5,200,000 </li></ul><ul><li>Population < 15yrs: 44% </li></ul><ul><li>Area:130,668 km2 </li></ul><ul><li>GIN per capita: US$ 600 </li></ul><ul><li>77.8% lives with <2US$/day </li></ul><ul><li>Population living in </li></ul><ul><li>extreme poverty: 17.2% </li></ul><ul><li>Adult Literacy Rate: 64% </li></ul><ul><li><5MR: 32./1,000 </li></ul><ul><li>Childhood Cancer:196 cases </li></ul>UNICEF 2003 ∕ CEPAL 2001/Pediatric Oncology Department Data Base
  3. 3. La Mascota Program Historical Aspects <ul><li>Before 1986 lack of adequate infrastructure to treat childhood cancer in Nicaragua. </li></ul><ul><li>In 1986 the program was developed with help of Italian (Monza) and Swiss Institutions (Bellinzona). </li></ul>
  4. 4. Rationale <ul><li>La Mascota Program was based on the belief than an attempt to reduce the mortality gap from cancer in Childhood between developed and less developed countries should become an integral part of the care and research activity of a hemato-oncology department of developed countries and not simply an exercise of solidarity. </li></ul>G. Masera, F. Cavalli, F. Baez et al. North-South twinning in paediatric haematologyoncology: La Mascota Programme, Nicaragua Lancet 1998;352:1923-1926
  5. 5. Aims of the Program <ul><li>To developed a Pediatric Cancer Unit. </li></ul><ul><li>Agreement for a cooperative global twinning program. </li></ul><ul><li>To offer the best possible and completely free of cost treatment to all children with cancer in Nicaragua. </li></ul>
  6. 6. Challenges faced <ul><li>Training of personnel </li></ul><ul><li>Physical structures </li></ul><ul><li>Diagnostic facilities </li></ul><ul><li>Antineoplastic drugs supply </li></ul><ul><li>Abandonment (adoption program) </li></ul><ul><li>Psychosocial support </li></ul><ul><li>Delayed diagnosis </li></ul>
  7. 7. Infrastructure <ul><li>Training of personnel: 8 pediatric oncologists, 12 nurses, 9 nurse assistants, psychosocial team, laboratory technicians, pathologist. </li></ul><ul><li>Physical structure: 30 bed hematology- oncology ward, Day-hospital, play room, Residence for families. </li></ul><ul><li>Chemotherapy: at the beginning provided by Monza-Bellinzona, actually by CONANCA , in the past year partially by the National Ministry of Health. </li></ul>
  8. 8. Physical Structure  
  9. 9. Results Achieved F . Baez, F. Fossati Bellani, F. Cavalli et al. Treatment of Childhood Wilms’ Tumor without Radiotherapy in Nicaragua . Ann Oncol 2002. 13: 944-948 F. Baez, E. Ocampo, V. Conter et al. Treatment of Childhood Hodgkin’s Disease with COPP or COPP-ABV (hybrid) without Radiotherapy in Nicaragua . Ann Oncol 1997.8: 247-250 Pediatr Blood Cancer, 43(4):348, 2004 Increasing number of cases. POND-La Mascota Data Base
  10. 10. Economic Sources to Achieve Continuity <ul><li>National Sources </li></ul><ul><li>CONANCA: provides US$400,000/year for chemotherapy, antibiotics, special exams(CT, MRI, Immuno-histochemistry, tumor markers,etc) </li></ul><ul><li>National League Against Cancer and Leukemia. </li></ul><ul><li>CENTI </li></ul><ul><li>Ministerio de Salud, Nicaragua </li></ul>
  11. 11. International Sources <ul><li>Tettamanti Foundation, Italy </li></ul><ul><li>Comitato M L Verga, Italy </li></ul><ul><li>ABIO (Associazione Bambino in Ospedale) Monza, Italy </li></ul><ul><li>AMCA (Ayuda Medica a Centro America), Switzerland </li></ul><ul><li>Zegna Foundation, Biella, Italy </li></ul><ul><li>Clelio Angelino Foundation, Biella, Italy </li></ul><ul><li>Lega Italiana dei Tumori – Milan, Italy </li></ul><ul><li>City Councel of Alessandria, Italy </li></ul><ul><li>Private Donation from Attilio and Piera Castellani, Italy </li></ul><ul><li>Program “Support a Child” , Italy and Swizertland </li></ul><ul><li>St Jude Children´s Research Hospital IOP Program, USA </li></ul><ul><li>A Tomorrow for Children Foundation, USA </li></ul><ul><li>Pediatric Oncolgy Group of Ontario (POGO), Canada </li></ul><ul><li>Horizon 3000, Austria </li></ul>
  12. 12. Still Problems to overcome Abandoment or Lost to therapy (%) 88 90 92 96 25 50 0 % 35 23 14 6 Psychosocial- Support Program Psychologist Social Worker “ Support a Child” Program Residence for families ALL- Managua-protocols 2000 10 MITCH 94 99 20 14 02 8 04 7
  13. 13. Abandonment - Disease La Mascota-POND Data Base 7.7 % Wilms’ Tumor 18.6 % Hodgkin Lymphoma 17.6 % Burkitt Lymphoma 11.6 % Acute Leukemias Abandonment of Therapy (%) Type of cancer
  14. 14. Abandonment=Social Problem <ul><li>Extreme Poverty :22/33=66.6% </li></ul><ul><li>(1–2 U$/day) </li></ul><ul><li>Cultural : 6/33 = 18.2 % </li></ul><ul><li>Religious: 3/33 = 9.1 % </li></ul><ul><li>Poor prognosis: 2/33 = 6 % </li></ul>Analyses of causes of abandonment in ALL Managua 2000 Protocol 16.1 % 14 74 > 6 11.5 % 10 87 4 - 6 4.8 % 8 167 1 - 3 3.8 % 1 26 0 % # Lost to Therapy # Pts Hrs from Managua.
  15. 15. Actions to reduce abandonment of therapy <ul><li>Educating Parents and Patients. </li></ul><ul><li>Economic Support to the families: adoption program </li></ul><ul><li>Local Support Network. </li></ul><ul><li>Local Parents’ associations. </li></ul><ul><li>Patients’ Search and rescue. </li></ul><ul><li>Satellite Pediatric Hemato-Oncology Clinics. </li></ul>
  16. 16. Delayed Diagnoses <ul><li>Review of 294 new cases diagnosed between January 2002 to February 2003: </li></ul><ul><li>Time from clinical presentation to diagnosis was </li></ul><ul><li>> 3 months in 34.7% </li></ul><ul><li>77.5% of children had more than one contact with a primary health center prior to referral. </li></ul><ul><li>64% were given incorrect medical treatment before obtaining diagnosis. </li></ul><ul><li>Solid tumors 51% were in advanced stage (Stage III 31%, Stage IV 20%) </li></ul>Silva Y, Monographic Thesis 2005
  17. 17. Adressing The Problem <ul><li>Educational campaigns to promote early detection and prompt referral: </li></ul><ul><li>2003 UNOPS-PNUD- with Italian Cooperation and Minisitry of Health “ Promoting Early Diagnosis Project” </li></ul><ul><li>2005 CONANCA “Early Diagnosis and Decentralization Project </li></ul><ul><li>2005 Leon´s National Autonomous University, School of Medicine and La Mascota Children´s hospital: Training curse for pediatrics fellows </li></ul>
  18. 18. Impact of Educational Campaigns Arguello-Salinas. 1995/Silva . 2003 Monographic Thesis 62% 70% Rabdomiosarcoma 18% 62% Retinoblastoma 60% 87% Wilms’ Tumor 48% 86% NHL 33% 62% HD Stage III-IV After 2002 (%) Stage III-IV Before 2000 (%) Type of Pediatric Cancer
  19. 19. Current Approaches <ul><li>&quot; Early Diagnosis, reduction of abandonment and decentralization of patient care at peripheral clinics &quot; was launched in September 2007 with funding by the Swiss organization AMCA </li></ul><ul><li>Aims: to improve the treatment compliance for Acute Lymphoblastic Leukemia, to reduce abandonment rates and to decentralize pediatric hemato-oncology care at five peripheral centers. </li></ul>
  20. 20. Activities Carried Out <ul><li>Training Worshops at La Mascota Hospital (September 2007 through February 2008): 5 pediatricians, 7 nurses and 5 laboratory technicians were trained. </li></ul><ul><li>194 people from primary care centers among nurses, physicians and community support personnel were trained locally to promote early diagnoses and to contribute to relocate and refer cases of abandonment of therapy. </li></ul>
  21. 21. Satellite Clinics <ul><li>Actually a total of 3 satellite clinics are already functioning in Matagalpa, Jinotega and Esteli administering maintenance treatment for acute lymphoblastic leukemia. </li></ul><ul><li>The other two clinics are still in process of development. </li></ul>
  22. 22. Future Activities <ul><li>Promoting community participation in childhood cancer care </li></ul><ul><li>(UICC Grant): </li></ul><ul><li>To Promote and articulate the participation of the community organizations with parents’ associations at the five regional centers selected to contribute to the reduction of treatment abandonment and delayed diagnoses. </li></ul><ul><li>To provide training to community leaders about general aspects of childhood cancer in order to race awareness on the importance of early diagnoses and to launch activities directed to the promotion and prevention of delayed diagnoses. </li></ul><ul><li>To establish a network of communication between parents’ association, and community organizations in order to create support groups that will contribute to the reduction of abandonment and to facilitate the adherence of the children to their treatment programs. </li></ul><ul><li>To articulate the work of peripheral clinics together with the community organizations and parents’ associations. </li></ul>
  23. 23. Conclusions <ul><li>The twinning approach is a realistic challenge which shows that intellectual, organizational and financial sources can be generated through effective cooperation between peers. </li></ul><ul><li>Twinning programs must motivate research-minded attitude and adaptation of technology to local conditions. </li></ul><ul><li>Childhood cancer mortality rates can be reduce by the implementation of an effective cancer program through a twinning model. </li></ul>

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