Interviews - Roberto Takaoka


Brazil

ABOUT YOUR OWN STRUCTURE :


  1. Puce First of all, do you have an individual and/or collective approach ?

                        We have a collective approach. The AADA (Brazilian Atopic Dermatitis Association) is a non-profit organisation founded in Brazil in 1997. It is comprised of patients, parents, doctors, nurses, psychologists and social workers. AADA’s mission is to improve the quality of life of patients with atopic dermatitis through art, science and education.


  1. Puce How many children have today integrated the patient education programme in your department ?

One of our main activities is a support group for patients with atopic dermatitis. About 1500 patients with atopic dermatitis have participated in our support groups since the beginning of the AADA in 1997.


  1. Puce How many participants are there in the collective workshops and who are they (children, parents, other adults…) ?

Nowadays we have 30-40 people in each support group meeting (30% are adolescents /adults, 40% parents and 30% children


  1. Puce Who are the educational staff for this programme (doctors, nurses, psychologists…) ?

Basically the educational staff are all volunteers and is composed of dermatologists, allergists, psychologists, patients, in some cases there are also social workers and dermatological nurses.


  1. Puce How many members of staff participate in this programme and what training, if any, do they receive ?

In Sao Paulo we have about 10 people working at the support group.


  1. Puce What are the principal aims of these workshops ?   

  2. Provide psychological and medical support

  3. Source of accurate information about the disease

  4. Share common experiences

  5. Improve patient / doctor / psychologist relationship

  6. Adhesion to treatment


  1. Puce Do you use educational support tools and if so can you describe them ?

We provide many educational materials: basic information about atopic dermatitis, food allergy in AD, psychological factors in AD,  etc… We also provide information through our website: http://www.aada.org.br


  1. Puce Do private dermatologists participate in this programme ?

Support groups are an open group and any dermatologist or other specialist can participate.


  1. Puce How is the link established between this programme and the dermatologists and paediatricians in private practice ?

Doctors find out about the AADA and the support groups through our website, medical publications and meetings.


  1. Puce How is this programme funded ?

Private donations and some pharmaceutical companies.


  1. Puce Do you have contact with other patient education teams, particularly those teams working with Asthma or Food Allergies ?

We have support groups in 10 Brazilian cities.



ABOUT PATIENT EDUCATION IN YOUR COUNTRY :


  1. Puce What role, if any, do parent associations/patient support groups, play in the AD patient education programmes ?

Support groups are the basis for our work.


  1. Puce What role, if any, do schools play in managing chronic skin disease ?

To our knowledge, there is no public policy for managing chronic skin disease in schools in Brazil. There are some individual attempts by parents to educate teachers and schoolmates. In this case, distribution of educational brochures about the disease is very helpful.


  1. Puce Do you have schemes like the PAI (in France this is an individualised adaptation project linking parents, children and teachers) ?

No.


  1. Puce Besides these programmes, is patient education developed for other pathologies in your country, and if yes, which pathologies are concerned ?

There are some groups and associations for psoriasis and lupus.


  1. Puce Do you have official patient education recommendations/guidelines in your country ?

No. Developing a treatment consensus for atopic dermatitis among dermatologists, allergist and paediatricians is a very difficult task.


  1. Puce How many active education departments exist today in your country ?

AADA has formed 10 support groups in other Brazilian cities,  usually linked to a local medical school or university.


  1. Puce Are there particular organisations to train the staff in patient education? If not, where is the staff trained ?

AADA can refer doctors and psychologists who have previously attended other support groups, to train and help form a new group.


  1. Puce How much do you invoice the whole education course ?

                                There are no payments or reimbursements.


                                   

            Thank you Roberto Takaoka

Dr Roberto Takaoka


President of the AADA (Brazilian Atopic Dermatitis Association)
& Collaborating Doctor, Department of Dermatology
University of São Paulo Medical School
São Paulo, BRAZIL