Frederica Cassis, PS, MC and Semiotics

Psychological approach in a Hemophilia Center, BrazilInternational Hemophilia Congress, Paris, 2012

Frederica Cassis, PS, MC and SemioticsHemophilia Center, Hospital das Clinicas,

São Paulo, Brazil

* European Accreditation Council for Continuing Medical Education

Conflict Disclosure - if conflict of interest exists

Research Support

Director, Officer, Employee

Shareholder

Honoraria

Advisory Committee

Consultant

In compliance with the EACCME* policy, WFH requires the following disclosures be made at each presentation:

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FROM A TOTAL OF 27 STATES

SOCIAL WORKER

PSYCHOLOGIST

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PSYCHO-SOCIAL SERVICES IN BRAZIL

• 19 states with Social worker and Psychologist ( Alagoas, Amapa, Amazonas, Bahia ,Ceará, Goias, Minas Gerais, Mato Grosso, 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)

CENTERS OF HEMOPHILIA IN SAO PAULO CITY

São Paulo

Brigadeiro Hospital

Santa Casa Hospital

Hemophilia Center of Hospital das Clinicas, FMUSP

Escola Paulista de Medicina-UNIFESP

Hematology Center

Hemophilia Center of Hospital das Clinicas, FMUSP

PATIENTS IN HEMOPHILIA CENTER OF HC

H A 146HB 41Inhibitors 6Other bleeding disorders 47v W 93

Population in Brazil

2011: * Total PWH: 10.421PWH A: 8.746PWH B: 1.675P w von Willebrand: 4.480Other bleeding disorders: 1.649 PWH A and inhibitors: 642PWH B and inhibitors: 30

SOME FACTS

1. Economic benefits of Comprehensive Care. World Federation of Hemophilia. Montreal. Website Facts Sheets for Government Advocacy. 3 April 2004;page 1

2. SPILSBURY, M. Haemophilia. (2004) vol 10, s4 25-293. 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

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MULTI-DISCIPLINES =

SELF KNOWLEDGE

FOR ALL

NURSE

COMPLIANCE

Ilness,Health and

Healing

MOTIVATION

ODONTOLOGIST

PHYSIOTHERAPY

ORTHOPEDIST

HEMATOLOGIST

LAB DIAGNOSIS

PERSON WITH BLEEDING

DISORDERSOCIAL

WORKER

FAMILY

PHYSIOTHERAPIST

MULTI-HUMANS interacting in a healing process

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…)

PSYCHOEDUCATION IS PROVIDING INFORMATION THAT TAKES INTO CONSIDERATION BOTH

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

PSYCHOLOGY AND SOCIAL SERVICE SCREENING QUESTIONNAIRES

• Simple questionnaires that approach psychosocial issues

• Can be administrated by any professional in hemophilia care team

1. Screen and detect difficulties that don’t allow prophylaxis

2. Provide support and treatment through a following up

Objectives

PSYCHOSOCIAL RESEARCH AND ITSPECULIARITIES IN EACH COUNTRY

On going projects

1. HERO project : Actual status and Brazil involvement1. 1. Publications: in Haemophilia

1. 1.1 In depth Qualitative analysis

2. Canada/Brazil : Cognitive debriefing of CHO-KLAT, HRQOL questionnaire for children.- Literacy study for CHO-KLAT application in Brazil2. 2.Publications: on going

3. Production of new cards for HEMOACTION with WFH

• Preparing the families for this new era of prophylaxis by clarifying doubts and myths on bleed and activities and compliance

NEW AND OLD CHALLENGES

• 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…)

MERCITHANK YOU

frederica.cassis@gmail.comwww.blood4.com