EUROCHIP-3 WP-6 on Cancer Rehabilitation indicators MEETING DISCUSSION AND FUTURE

1. 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/

2. 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 self-determination. DEFINITION APPLIED IN WP-6: YET TO BE AGREED UPON

3. 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

4. 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

5. 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

6. 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

7. Next Meeting • ECL meeting on survivorship Brussels 7-8 September 2011 (http://www.europeancancerleagues.eu/about-ecl/3-highlights/229-patient-support-cancer-continuum-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

8. The EUROCHIP3 Wp6 is to produce a final report for EC covering: • WP-6 background and methods • WP-6 definition of rehabilitation • WP-6 suggestions for the EC • State of art of cancer rehabilitation in Europe • The final list of indicators, including: • A descriptive form of the indicators (RATIONALE, CAVEAT, DESCRIPTION) • A suggestions on methods and sources

9. 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

10. 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

11. Publications • Cancer World article by ESO before the end of 2011 • Scientific article on cancer rehabilitation in EU • Participation of all cancer experts involved in the WP-6 • Public health journal • Expected date: 2012