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EUROCHIP-3
WP-6 on
Cancer Rehabilitation indicators
MEETING DISCUSSION
AND FUTURE
EUROCHIP3 Project leader: Dr Andrea Micheli
WP-6 Leader: Dr Piret Veerus
EUROCHIP Working Group: Drs Camilla Amati and Paolo Baili
http://www.tumori.net/eurochip/
REHABILITATION/SURVIVORSHIP DEFINITION
• WHO definition of Rehabilitation
Rehabilitation of people with disabilities is a process
aimed at enabling them to reach and maintain their optimal
physical, sensory, intellectual, psychological and social
functional levels. Rehabilitation provides disabled people
with the tools they need to attain independence and selfdetermination.
DEFINITION APPLIED IN WP-6: YET TO BE AGREED
UPON
DISCUSSION ON INDICATORS – PREVALENCE (1)
• Total Prevalence
– The indicator is not strictly related with rehabilitation
– It is not enough to describe the burden of rehabilitation
– Total prevalence can be the reference denominator for other specific indicators
on rehabilitation
• Proportion of non-cured patients
– Cured proportion (and consequently non cured proportion) is estimable from
long-term cancer survival database through models
– This proportion can be proxy of patient groups with different needs
(rehabilitation and non rehabilitation needs)
• Conditioned survival
– Represent the patient probability to survive (and consequently to die) after x+j
years since diagnosis even that the patient survived up to x
– Also this indicator can be a proxy of patient groups with different needs
• Qualified prevalence (Gatta G et al, Ann Onc, 2004 http://www.ncbi.nlm.nih.gov/pubmed/15205210)
– Subdivide prevalence according the cancer history of patients (main treatments
and various recurrences/metastasis/other tumors)
– Require at least 10 years of data on a cohort of cancer patients
– Terminology used in the article will be changed
– Also this indicator can be a proxy of patient groups with different needs
DISCUSSION ON INDICATORS – PREVALENCE (2)
• All the indicators included in previous slides require cancer
registry as a source
• Qualified prevalence requires ad hoc studies on patient groups
(specific for cancer site) randomized from cancer registry
database
• Conditioned survival can be estimated in the majority of
European countries by EUROCARE
• Non cured proportion of patients is estimated by EUROCARE on
long-term survival data
Discussion for future meeting
• Which indicator(s) would you like to insert in the final list?
• For each indicator included it is really important to define what
are they proxy for?
• This way we can define the rationale to insert them in a list for
cancer rehabilitation
DISCUSSION ON INDICATORS - CAPACITY
• Replies gathered through the WP6 questionnaires show that
– The indicator should be useful
– It is difficult to find in all countries an institution strictly dedicated for
cancer rehabilitation
– This way it is really difficult to have a common proxy indicator for all
European countries
• The conclusion is that it is very difficult to have comparable data
of one indicator on capacity across Europe
• However information on capacity across Europe are very useful
for the EC report, for the WP6 scientific publication and for the
connection with other projects
DISCUSSION ON INDICATORS – QoL and OTHER INDICATORS
• The group underlines that to describe rehabilitation across Europe is
necessary to include in the list :other indicators on rehabilitation care
received by the patients, patient rehabilitation needs, changes in the
patient life due to cancer and evaluate the possibility to include indicators
on palliative care
• Some countries already performed studies collecting some of these data.
Before the next meeting the group will check available information online
and in PubMed. The main point is to check if these data are comparable
across Europe (that is if they are calculated with the same sources and
methods)
• The possible alternative is to think on a list of collectable indicators (e.g.:
rehab care received, QoL, Return to normal life, Possibility to have a Child, etc).
THIS CAN BE DONE through a survey for cancer patient/cancer patient
relatives possibly in connection satisfaction questionnaires or the
EORTC questionnaire.
• In this case the survey should be designed and performed on
patient groups (specific for cancer site) randomized from cancer
registry database
Next Meeting
• ECL meeting on survivorship Brussels 7-8
September 2011
(http://www.europeancancerleagues.eu/aboutecl/3-highlights/229-patient-support-cancercontinuum-ecl-conference.html)
• EUROCHIP WP-6 will participate in the
audience
• Next EUROCHIP WP6 to be organised on Sept
9th at the Institute of Public Health in Brussels
The EUROCHIP3 Wp6 is to produce a final report
for EC covering:
a)WP-6 background and methods
b)WP-6 definition of rehabilitation
c) WP-6 suggestions for the EC
d)State of art of cancer rehabilitation in Europe
e)The final list of indicators, including:
a)A descriptive form of the indicators
(RATIONALE, CAVEAT, DESCRIPTION)
b)A suggestions on methods and sources
The EUROCHIP WP-6 is connected with the EC EPAAC
www.epaac.eu
• TIMEFRAME: our WP-6 is concluding when EPAAC is starting
• Suggestions coming from EUROCHIP WP-6 will be feeding into the
activity of EPAAC WP-9 and other WPs of EPAAC (e.g. WP5, WP7,
WP10)
Example (1)
• In EPAAC WP-9 one objective focuses on survivorship “identify goals
and methodological aspects to understand and share experiences
for collecting survivorship data at population level through cancer
registries”
• WP-6 could suggest to collect indicators with survey to cancer
patients extracted from cancer registries (CRs) databases
• EPAAC WP-9 may discuss with CRs if this is possible (law problems),
may collect an inventory of the studies already available across
Europe, may prepare the protocol for data collection
OTHER EXAMPLES of the connection of
EPAAC and EUROCHIP WP-6
• Palliative care is a matter dealt in EPAAC WP-7 “Cancer care”
• During the EPAAC Open Forum in Madrid, the European Association
of Palliative Care (EAPC) presented its involvement in the EPAAC
• During our experience in EUROCHIP-1 we involved some experts of
EAPC learning that they were working and discussing on common
indicators in Europe
• We will connect EUROCHIP WP-6 with EAPC asking for their activity
on this matter
Publications
a)Cancer World article by ESO before the end of 2011
b)Scientific article on cancer rehabilitation in EU
• Participation of all cancer experts involved in
the WP-6
• Public health journal
• Expected date: 2012