CANCER INFORMATION: WHAT ARE THE BEST SOURCES

1
CANCER INFORMATION WHAT ARE THE BEST SOURCES?

• ECLUPatient SeminarLugano, 7th July 2007
• Marco Varini, MD
• Associazione Triangolo, Lugano

2
Sub TitleWHATS ALL ABOUT PATIENTS INFORMATION?

• THE PERSONAL VIEW OF AN ONCOLOGIST
• WHO IS NOT AN INFORMATION SPECIALIST

3
INFORMATION, WHY?
Da MA Annunziata, CRO Aviano
4
INFORMATION, WHY?

• Many important reasons!
• No information is practically impossible
• Missing information misinformation

5
INFORMATION, WHY?

• Meet request to satisfy natural curiosity
• Meet desire to understand
• Uncertainty is intolerable generates anxiety
• Effective doctor/patient relationship
• Tool for patient empowerment

6
INTERPERSONAL COMMUNICATION
INFO 1
INFO 1a
7
INFORMATION ? COMMUNICATION

• In practice not easy to separate
• Information implies communication
• Personal communication creates relationship

8
HEALTH INFORMATION

• Traditionally by the doctor
• Now MANY SOURCES

9
INFORMATION BY THE DOCTORNOT JUST INFORMATION

• Medical act
• Creates a relationship
• May be therapeutic
• COMPLEX PROCEDURE
• IS NOT A LEAFLET

10
COMPLEXITY OF THE INFORMATION PROCESS

• Significance of the diagnosis
• Therapeutic options
• Staging procedures
• Making choices
• Emotional distress
• DYNAMIC PROCESS
• ALLOW TIME FOR ELABORATION AND COOPING

11
FREQUENT SITUATIONSIN ONCOLOGY

• Request for information hasEMERGENCY CHARACTER
• BAD NEWS

12
BAD NEWS

• Responsability of the caring doctor to give the
  information
• One of the most difficult doctors tasks
• Doctors malaise
• Insufficient training

13
WHAT WANTS TO KNOW THE PATIENT?

• 50-90 COMPLETE INFORMATION
• Not requested by all the patients!
• Patients divided into avoiders and seekers

14
FREQUENT QUESTIONSExpressed and unexpressed

• What are my chances?
• How long will I live?
• How much time do I have left?
• How bad can it get?
• Will I go downhill fast?
• What can be done to control it?
• What are the risks of this condition?
• Will I be able to continue my daily activities?

15
REMEMBERNO ONE IS DEPOSITARY OF THE
TRUTH(not even doctors)
16
CONDITIONS FOR EFFICIENT INFORMATION

• Competence and knowledge of the clinical
  situation
• Agreable room and sitting
• Allow for sufficient time availibility
• Adequate emotional and intelectual discussion
  level
• Listening capacity
• Relevant information, true and clear
• Discussion preferably in presence of family or
  near friends
• Dynamic process, allow for more encounters

17
TIPS FOR GOOD COMMUNICATION

• Find out what the patient already knows
• Speak simply and clear
• Tune in with patients pace pause, silence.
• Make sure he understands
• Summarize info and make clear plans for the future

18
HOW TO MEET PATIENTS NEEDS FOR INFORMATION?

• Different needs for different patients
• Disease status
• Age
• Cultural/social background
• Emotional status
• Individual views about existence
• Understand the patients questions (explicit and
  unexplicit)
• Ask specific questions to clarify needs

19
WHERE TO GET INFORMATIONS?

• Beyond the doctors office

20
AQUISITION OF INFORMATION

• Our 5 senses as primary source
• We feel, we see, we hear, we taste, we smell
• ? general perception of well/not well beeing
• ? comparison with our experience and knowledge
• ? QUESTIONS
• ? search for other sources
• External sources
• ?comparison with our experience and knowledge
• ?NEW QUESTIONS
• ?SEARCH FOR SOLUTIONS, etc.

21
SOURCES OF INFORMATION

• Doctor/Care giver
• Other patients
• Professional organizations
• Patient organizations
• Institutions (Government, Hospitals,
  Insurances,)
• Private organizations (Cancer associations,
  Foundations...)
• Companies with commercial interest (Pharma,)
• News (Newspapers, TV, Radio, Reuters, )

22
TOOLS OF INFORMATION 2007

• Verbal communication
• Medical consultation
• Family, Friends, Patients, Gossip
• Tel Help Lines, SMS
• Radio
• Internet (may be interactive)
• Chat lines, Blogs, Garbage,
• Patient dedicated info
• Print (Specialized patient journals, leaflets,
  lay press, )
• TV
• Other (Audiotapes, DVD, Palm,..)

RELATIONSHIP
23
ON THE INTERNET?
24
INFORMATION TSUNAMI!
25
INTERNET IS A REALITY AND A BIG
OPPORTUNITYWE HAVE TO LIVE WITH ITAND MAKE THE
BEST OUT OF IT
26
PREFERRED SOURCES OF INFORMATION619 cancer
survivors interviewedD.K.Mayer et al., Patient
Education and Counseling 65(2007) 342
27
SOME WEB SITES FOR PATIENTS

• English
• www.cancer.gov (Español)
• www.medlineplus.org (Español)
• www.plwc.org (Español)
• www.cancerbacup.uk
• Italiano
• www.aimac.it
• www.azaleaweb.it
• Français
• www.chu-rouen.fr/cismef
• Deutsch
• www.krebsinformationsdienst.de
• www.krebs-kompass.de/

28
Informazioni double-face per pazienti e medici
29
Pazienti e medici lavorano insieme
Entrambi voi e il vostro dottore giocate un ruolo
importante nel realizzare i vostri obiettivi di
salute
30
VIRTUAL WORLD
31
REAL WORLD
From MA Annunziata, CRO Aviano
32
INDISPENSABLE RESOURCETIME

• Time to elaborate information
• Time for effective communication
• Time to build relationship
• TIME IS A SCARSE RESOURCE!!!!

33
THANK YOU!
34
(No Transcript)