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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.

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qol symptom research pro in cancer clinical trials eortc
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 EuropaUomo – 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
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
Stakeholders Social Health Care

Health Authority

Industry Pharma


Insurance Public Private

Professionals Practice Research

Hospitals Universities


Cancer Leagues



Europa Uomo 2009

perspectives of a cancer patient
Perspectives of a Cancer Patient
  • Diagnosis and treatment: The lost patient.
  • After primary treatment: Remission, surveillance, psycho-social balance, facing outcome short & long term.
  • Long term: chronic disease, reintegration in society, dealing with cure, control or death.

Europa Uomo 2009

the lost patient
The ‘lost’ Patient

Tsunami information

(professionals, media, friends)




The medical labyrinth

Evidence Based, Guidelines,


Loss of personality

Europa Uomo 2009

patients perspectives on congress definitions
Patients’ Perspectives on Congress Definitions

Quality of Life: WHO QoL 1993

Quality of Life is not a statistical equation but a subjective feeling of well-being.

Europa Uomo 2009

patients perspectives on congress definitions1
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 definitions2
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
HRQoL in Practice
  • Subjective and a patients’ perception.
  • Conceptual: Domain of definitions.
  • Operational: Related to outcome and expectations (evidence vs. consience based).
  • Communication and shared care (specialist, GP, nurse, relatives, groups, patients).

Europa Uomo 2009

cancer management a patients perspective
Cancer Management: A Patients’ Perspective
  • Optimal Medical Treatment

Provided by professionals in a multiprofessional frame.

Aim: Excellence, Updated, Balance in side- effects.

  • Patient Centered Care

Involve patients in shared care and broad support.

Aim: Holistic, QoL, Equality

Europa Uomo 2009

hrqol quo vadis
HRQoL: Quo Vadis?
  • A fashionable, politically correct concept.
  • Cancer management and well-being are different but parallel rails in a train track.
  • Needs more long term expertise, teamwork and funding.
  • Needs basic integration in the health car system.

Europa Uomo 2009

europa uomo quotes
Europa Uomo quotes
  • To find ways and means to promote quality of life for prostate cancer patients and their families (manifesto 2004)
  • 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
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
Side-effects of Pca ‘classic’ treatment vs. Control aged cohort

Erectile Dysfunction 67% vs 18%


urine 33% vs. 4%

bowel 9% vs. 2%

adapt to the situation.

F. Mols 2007

europa uomo s expectations on hrqol in prostate cancer
Europa Uomo’s Expectations on HRQoL in Prostate Cancer
  • Design treatment schedules focused on the patient (age, co-morbidity) and then the cancer.
  • QoL measurement and validated instruments in one single basic form to be extended to shifting problems and environment.
  • Improve info & communication to the unique need of the individual patient.
  • Adapt the curriculum of physicians and nursing to the social needs of society.
  • 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
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
Hope and Gratitude: A response of support
  • 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
General Priorities to improve HRQoL








Olympic stand


Pandora’s box

Europa Uomo 2009

life expectancy
Life Expectancy
  • Age
  • Health
  • Activity
  • Address
  • Social Status

EUomo, 2009