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QoL, Symptom Research, PRO in
Cancer Clinical Trials - EORTC
Patients and Regulatory Views
Why HRQoL is important to
Patients? A Patients’ Perspective.
Louis Denis
Secretary Europa Uomo – Chair PAC ECCO
November 26, Brussels
A patient with an opinion on
cancer care is a person with a
special individual expertise
lacking in health managers and
providers.
Mrs. Els Borst 2009
Respect for the Patient
Examinations and consultations are not
to be interrupted by colleagues,
telephone and other calls.
Information and education is only given
to the patient after the physical
examination (or before). Patients’
decision for CAM treatment should be
handled within the professional realm.
NFK Quality Criteria Oncology Care 2009
Stakeholders Social Health Care
Health Authority
Industry
Pharma
Technology
Insurance Public
Private
Professionals Practice Research
Hospitals Universities
General
Cancer Leagues
Consumers
Patients
Europa Uomo 2009
Perspectives of a Cancer Patient
1. Diagnosis and treatment: The lost patient.
2. After primary treatment: Remission,
surveillance, psycho-social balance,
facing outcome short & long term.
3. Long term: chronic disease, reintegration
in society, dealing with cure, control or
death.
Europa Uomo 2009
The ‘lost’ Patient
Tsunami information
(professionals, media, friends)
Outcomes
Statistics
The medical labyrinth
PANIC
Loss of personality
Evidence Based, Guidelines,
Nomograms
Europa Uomo 2009
Patients’ Perspectives on Congress
Definitions
Quality of Life: WHO QoL 1993
Quality of Life is not a statistical
equation but a subjective feeling of wellbeing.
Europa Uomo 2009
Patients’ Perspectives on Congress
Definitions
Symptom Research:
The gap between listed symptoms and
personal bother is often ignored by the
physician (weakness of surveys).
Europa Uomo 2009
Patients’ Perspectives on Congress
Definitions
Patient reported outcomes in CT:
An essential but neglected part of end results
of treatment.
HRQoL vulnerable in each step of the
diagnosis and treatment.
Sequential information (truth) and trusted
communication helps.
Europa Uomo 2009
HRQoL in Practice
1. Subjective and a patients’ perception.
2. Conceptual: Domain of definitions.
3. Operational: Related to outcome and
expectations (evidence vs. consience
based).
4. Communication and shared care
(specialist, GP, nurse, relatives, groups,
patients).
Europa Uomo 2009
Cancer Management: A Patients’
Perspective
1. Optimal Medical Treatment
Provided by professionals in a multiprofessional
frame.
Aim: Excellence, Updated, Balance in sideeffects.
2. Patient Centered Care
Involve patients in shared care and broad support.
Aim: Holistic, QoL, Equality
Europa Uomo 2009
HRQoL: Quo Vadis?
1. A fashionable, politically correct
concept.
2. Cancer management and well-being are
different but parallel rails in a train track.
3. Needs more long term expertise,
teamwork and funding.
4. Needs basic integration in the health car
system.
Europa Uomo 2009
Europa Uomo quotes
1. To find ways and means to promote
quality of life for prostate cancer
patients and their families (manifesto
2004)
2. Choosing quality of life (QoL) above
life is a patient’s right (2005)
3. Give our life back (2008)
Europa Uomo 2009
QoL issues in Prostate Diseases
Prostatitis: Needs more care than
treatment
BPH:
QoL question mostly decisive
in IPSS score
Cancer:
No reliable data on treatment
outcomes
Europa Uomo 2009
Side-effects of Pca ‘classic’
treatment vs. Control aged cohort
Erectile Dysfunction
67% vs 18%
Incontinence
urine
bowel
33% vs. 4%
9% vs. 2%
adapt to the situation.
F. Mols 2007
Europa Uomo’s Expectations on
HRQoL in Prostate Cancer
1. Design treatment schedules focused on the patient (age,
co-morbidity) and then the cancer.
2. QoL measurement and validated instruments in one single
basic form to be extended to shifting problems and
environment.
3. Improve info & communication to the unique need of the
individual patient.
4. Adapt the curriculum of physicians and nursing to the
social needs of society.
5. Involve patients in info education and clinical trials
(ethics, consent, end review phase II, III and IV) going for
long term evaluations.
Europa Uomo 2009
Hope and Gratitude:
A simple Call Out (18.09.09, Antwerp)
• Governments to recognise the morbidity and mortality burdens of
prostate cancer.
• Governments to commit to sustainable support for basic and
clinical research for new biomarkers and for clinical trials
comparing different treatments.
• Health professionals to educate their patients about the risk factors
for prostate cancer, such as family history, ensuring those at risk
are given appropriate information.
• Physicians to tailor treatment to the individual patient through
appropriate use of PSA testing to avoid over- or under-treatment
• Society to build partnerships which help reduce the burden of
disease, to identify common actions and overcome the existing
inequalities around access to treatment.
Europa Uomo 2009
Hope and Gratitude:
A response of support
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European Association of Urology
European School of Oncology
European Oncology Nursing Society
European Society for Medical Oncology
European Society for Surgical Oncology
European Cancer Prevention Organisation
European Society of Oncology Pharmacy
European Randomised Study of Screening for Prostate
Cancer
• European Cancer Patient Coalition
Europa Uomo 2009
General Priorities to improve HRQoL
Knowledge
Prevention
Rich
Collaboration
Transparant
Reality
Treatment
Poor
Olympic stand
Pandora’s box
Europa Uomo 2009
Life Expectancy
• Age
• Health
• Activity
• Address
• Social Status
EUomo, 2009