Oral Presentation COSA-IPOS Joint Scientific Meeting 2012

Indicators for cancer patients’ rehabilitation: results from the European Cancer Health Indicator Project (Eurochip-3) (#237)

Josette Hoekstra-Weebers 1 2 , Paolo Baili 3 , Elke Van Hoof 4 5 , Luzia Travado 6 , Miklos Garami 7 , Hans Helge Bartsch 8 , Piret Veerus 9
  1. Comprehensive Cancer Center Netherlands, Groningen, the Netherlands
  2. Wenckebach Institute, University Medical Center Groningen, Groningen, the Netherlands
  3. Istituto Nazionale dei Tumori, Milan, Italy
  4. Faculty of Psychological and Educational Sciences, Free University of Brussels, Brussels, Belgium
  5. Belgian Cancer Center, Scientific Institute of Public Health, Brussels, Belgium
  6. Clinical Psychology Unit, Central Lisbon Hospital Center-Hospital S. José, Lisbon, Portugal
  7. 2nd Department of Pediatrics, Semmelweis University, Budapest, Hungary
  8. Tumor Biology Centre, Albert-Ludwigs University, Freiburg, Germany
  9. National Institute for Health Development, Tallinn, Estonia

Aim: To improve quality of cancer patients’ rehabilitation and guarantee equal rights to all citizens across Europe, Eurochip-3 aims to propose collectable, comparable rehabilitation indicators in all EU countries. Indicators should be at population level, thus, available in cancer registries.

Method: thirty-five experts on cancer rehabilitation in the 27 EU member states were contacted to reach consensus on a list of indicators. Five meetings were organised in which a varying number of experts participated. Two surveys were mailed to which at least one expert from each country replied. Discussion and surveys focused on collecting opinions and reaching agreement on indicators available and measurable throughout Europe.

Results: an initial list of 12 indicators was formulated in 4 relevant indicator domains: 1) cancer burden; 2) role of cancer rehabilitation on political/clinical agenda’s; 3) rehabilitation capacity; 4) success of rehabilitation. The first survey and round of meetings resulted in an intermediate list of 12 indicators, six were the same and six were (slightly) different from the initial list. The second survey and round of meetings resulted in the final list of indicators: prevalence, and cured and qualified prevalence in the first domain; return to work, quality of life, and four specific indicators on rehabilitation needs in the fourth domain: speech/ language therapy for head/neck cancer patients, physiotherapy for breast cancer, dietician support for colorectal cancer, and psychological support for all cancer patients. No agreement was reached on indicators in domains 2 and 3. However, proxy yes/no information was collected to map political/clinical attention to cancer rehabilitation in the EU countries.

Conclusion: indicators for cancer burden are collectable through cancer registries. Proposed indicators for rehabilitation success are not routinely recorded in cancer registries. These indicators could be collected through questionnaires sent to random samples drawn from cancer registries or linking possibly existing databases