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Frederica Cassis, PS, MC and Semiotics

Psychological approach in a Hemophilia Center, Brazil International Hemophilia Congress, Paris, 2012. Frederica Cassis, PS, MC and Semiotics Hemophilia Center, Hospital das Clinicas , São Paulo, Brazil. FROM A TOTAL OF 27 STATES . PSYCHO-SOCIAL SERVICES IN BRAZIL. SOCIAL WORKER.

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Frederica Cassis, PS, MC and Semiotics

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  1. Psychological approach in a Hemophilia Center, BrazilInternationalHemophilia Congress, Paris, 2012 Frederica Cassis, PS, MC and Semiotics Hemophilia Center, Hospital das Clinicas, São Paulo, Brazil

  2. FROM A TOTAL OF 27 STATES • PSYCHO-SOCIAL SERVICES IN BRAZIL • SOCIAL WORKER • PSYCHOLOGIST • 7 • 2 • 2 • 5 • 2 19 states with Social worker and Psychologist( Alagoas, Amapa, Amazonas, Bahia ,Ceará, Goias, Minas Gerais, MatoGrosso, Distrito Federal, Pará, Paraíba, Pernambuco, Piauí, Paraná, Rio de Janeiro, Santa Catarina, Sergipe, São Paulo e Rio Grande do Sul) 6 states only Social worker ( Espirito Santo, Maranhão, Rio Grande do Norte, Rondônia, Roraima , Tocantins) 2 states with no psychosocial service(Acre, MTSul)

  3. CENTERS OF HEMOPHILIA IN SAO PAULO CITY São Paulo Brigadeiro Hospital Hemophilia Center of Hospital das Clinicas, FMUSP EscolaPaulista de Medicina-UNIFESP Santa Casa Hospital Hematology Center

  4. PATIENTS IN HEMOPHILIA CENTER OF HC • Hemophilia Center of Hospital das Clinicas, FMUSP Population in Brazil • H A 146 • HB 41 • Inhibitors 6 • Other bleeding disorders 47 • v W 93 2011: * Total PWH: 10.421 PWH A: 8.746 PWH B: 1.675 P w von Willebrand: 4.480 Otherbleedingdisorders: 1.649 PWH A andinhibitors: 642 PWH B andinhibitors: 30

  5. SOME FACTS ¹ 2 3 • Economic benefits of Comprehensive Care. World Federation of Hemophilia. Montreal. Website Facts Sheets for Government Advocacy. 3 April 2004;page 1 • SPILSBURY, M. Haemophilia. (2004) vol 10, s4 25-29 • CASSIS, F.R.M.Y., QUEROL, F.,FORSYTH, A., IORIO, ON BEHALF OF THE HERO INTERNATIONAL ADVISORY BOARD. Haemophilia(2011), Psychosocial aspects of Haemophilia : a systematic review of methodologies and findings. 18: e101-e114. doi: 10.1111/j.1365-2516.2011.02683.x Social workers and psychologists are to be included in multidisciplinary care team Psychosocial workers are underutilized in most countries Challenges for psychosocial workers around the world to participate in research and publish their important and necessary results

  6. MULTI-HUMANS interacting in a healing process MULTI-DISCIPLINES = • COMPLIANCE • Ilness, • Health and Healing • MOTIVATION • NURSE • HEMATOLOGIST • PERSON WITH BLEEDING DISORDER • SOCIAL WORKER • FAMILY • PHYSIOTHERAPIST • LAB DIAGNOSIS • SELF KNOWLEDGEFOR ALL ODONTOLOGIST PHYSIOTHERAPY ORTHOPEDIST

  7. PSYCHOEDUCATION IS PROVIDING INFORMATION THAT TAKES INTO CONSIDERATION BOTH PATIENT’S PHASE OF LIFE (child, adolescent, young adults, adulthood and aging) and(working, studying , in love, heart broken, depressed, divorcing …) PATIENT’S PHASE OF TREATMENT • (home therapy, self-infusion program, prophylaxis, HCV treatment, hospitalization…)

  8. A NEW CHAPTER FOR TREATMENT IN BRAZIL GOOD NEWS! NEW PROGRAMS • 2011 Primary Prophylaxis is available for children until 3 years of age and Immune tolerance program • 2012 More factor: Raising from 1,1 to 3 UI FVIII per capita

  9. PSYCHOLOGY AND SOCIAL SERVICE SCREENING QUESTIONNAIRES • Simple questionnaires that approach psychosocial issues • Can be administrated by any professional in hemophilia care team Objectives 1. Screen and detect difficulties that don’t allow prophylaxis 2. Provide support and treatment through a following up

  10. PSYCHOSOCIAL RESEARCH AND ITSPECULIARITIES IN EACH COUNTRY • On going projects • Canada/Brazil : Cognitive debriefing of CHO-KLAT, HRQOL questionnaire for children.- Literacy study for CHO-KLAT application in Brazil • 2.Publications: on going • HERO project : Actual status and Brazil involvement • 1. Publications: in Haemophilia • 1.1 In depth Qualitative analysis Production of new cards for HEMOACTION with WFH

  11. NEW AND OLD CHALLENGES • Preparing the families for this new era of prophylaxis by clarifying doubts and myths on bleed and activities and compliance • Maintain the educational preventive approach tailoring it to each population peculiarities :(aging population and comorbidities - compliance in teenagers and young adults, diagnosis moment and parents, school years and autonomy with prophylaxis or on-demand programs…)

  12. MERCITHANK YOU frederica.cassis@gmail.com www.blood4.com

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