On October 23rd, 2014, we updated our
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The perception of patients and doctors of the risks and benefits differs.
High quality information is essential
50% of medicines prescribed for people with chronic conditions are not taken Jones G. BMJ 2003;327:819-20
Adherence & frequency of doses Osterberg L & Blaschke T. N Engl J Med. 2005;353:487-97.
Smoking habit in COPD patients Med Clin (Barc) 1989;93:772-4 of patients on LTOT were current smokers 27% Current smokers 23% Hernández. Eur Resp J 2003;21:58-6 . Hospital at home 26% Eur Respir J 2000;16:1037-42 EFRAM Study
Smoking & LTOT in Denmark 25.1% Ringbaek TJ, Lange P. Respir Med 2006; 100:218-25 Danish register Current smokers 21.1% NS 1994 2000
At home... I was working at home reading my old Chest diseases textbook and my daughter (16 yrs old) asked me...
What are you doing?
I’m working in a presentation
What’s the topic
Uff, always the same... Doctors are prepotent and arrogant
Coulter A. BMJ 1999;319:719-20 Paternalism is endemic in the NHS
LTOT prescriptions without ABG criteria 1984 1995 56% 40% Escarrabill. Lancet 1985:ii:779. Farrero. Arch Bronconeumol 1998;34:374-8 LTOT: compliance with guidelines LTOT Danish register 1994 65% Incorrect prescription 2005 LTOT < 15 h/day 65% Follow-up withdraw 33% Current smokers on LTOT 21% Ringbaek TJ & Lange P. Respir Med. 2006;100:218-25.
LTOT: Improvement of the survival through the time
JAMA 1998;279:1309 Provision of adequate context for new research results is one of the main problems in presenting medical and health news for the public. a tool for more effective communication between patients and physicians.
Only one Patient page per issue
Difficult access for the patient
Not necessarily related to specific patient needs
Health literacy vs poor communication
A powerful tool.... The pediatrician of my daughter typed systematically all the recommendations in an old typewriter
Health literacy Health Literacy Health Education The degree to which people have de capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions
Impact of limited health literacy
Fill out complex forms
Locate providers and services
Share personal information such as health history
Take care of yourself
Manage a chronic disease
Understand how to take medicines
Doctors and health education
SEPAR and health literacy
Health literacy anf Web 2.0
www.separ.es/ Public information about respiratory diseases
Doctors and nurses promoting activities especifically related to care.
Participation of the patients in the activities of the society
Partients in the scientific meetings
www.separ.es/ Sleep apnea
High prevalence (>5% adults)
Therapy for life in most cases
Changes in life style
Sleep Apnea Syndrome
Guarantee the education through the years.
Education to a greater number of patients.
Doing intelligible the education.
Sharing the point of view of the patient on the illness
Tutor patient in sleep disorders Benefits
Tutor patient: development of the project
Main characteristics of the disease
Health habits and therapy
1 Experts identify the main topics www.universidadpacientes.org/ www.separ.es
Tutor patient: development of the project 2 Definition of competences What competences should have the tutor patient to be able to teach other patients? 3 Asking the patients Interviews Focus groups
Tutor patient: development of the project Health professionals Tutor patient Patient Patient Patient Patient Patient Tutor patient Patient Patient Patient Patient Patient Tutor patient Patient Patient Patient Patient Patient