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
In compliance with the EACCME* policy, WFH requires the following
disclosures be made at each presentation:
Conflict
Disclosure - if conflict of interest exists
Research Support
Director, Officer, Employee
Shareholder
Honoraria
Advisory Committee
Consultant
* European Accreditation Council for Continuing Medical Education
2
FROM A TOTAL OF 27 STATES
PSYCHO-SOCIAL
SERVICES IN BRAZIL
2
SOCIAL WORKER
PSYCHOLOGIST
• 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)
7
5
2 2
CENTERS OF HEMOPHILIA IN SAO PAULO CITY
Brigadeiro Hospital
Hemophilia Center of Hospital das Clinicas, FMUSP
Escola Paulista de Medicina-UNIFESP
Santa Casa Hospital
Hematology Center
São Paulo
PATIENTS IN HEMOPHILIA CENTER OF HC
Hemophilia Center of Hospital das Clinicas, FMUSP
Population in Brazil
2011: * Total PWH: 10.421
PWH A: 8.746
PWH B: 1.675
P w von Willebrand: 4.480
Other bleeding disorders: 1.649
PWH A and inhibitors: 642
PWH B and inhibitors: 30
H A 146
HB 41
Inhibitors 6
Other bleeding disorders 47
v W 93
SOME FACTS
• Social workers and psychologists are to be included in
multidisciplinary care team ¹
• 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 3
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 25-29
3.
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
2
MULTI-DISCIPLINES =
MULTI-HUMANS interacting
in a healing process
LAB DIAGNOSIS
ODONTOLOGIST
COMPLIANCE
HEMATOLOGIST
NURSE
Ilness,
Health and
Healing
SELF
KNOWLEDGE
FOR ALL
SOCIAL
WORKER
PHYSIOTHERAPIST
PERSON
WITH BLEEDING
DISORDER
MOTIVATION
FAMILY
ORTHOPEDIST
PHYSIOTHERAPY
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…)
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
Objectives
1. Screen and detect difficulties
that don’t allow prophylaxis
2. Provide support and treatment
through a following up
PSYCHOSOCIAL RESEARCH AND ITS
PECULIARITIES IN EACH COUNTRY
On going projects
1. HERO project : Actual status and Brazil involvement
1. 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 Brazil
2. 2.Publications: on going
3. Production of new cards for HEMOACTION with WFH
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…)
[email protected]
www.blood4.com