[Development of indicators to evaluate colorectal cancer prevention programs in the high-risk population. The experience of a high-risk colorectal cancer clinic.]
ABSTRACT BACKGROUND/OBJECTIVE: In 2006, the High-Risk Colorectal Cancer (CRC) Clinic was set up in Barcelona, a new healthcare model aimed at individuals and/or patients with an increased risk of developing CRC. The aim of this study was to develop a set of indicators to evaluate CRC prevention programs in the high-risk population and to implement them in the CRC to confirm their feasibility and validity in identifying areas for improvement. METHODS: A literature search was performed and consensus techniques were applied with experts linked to the prevention programs in the distinct autonomous regions in Spain to propose a conceptual model for the evaluation and indicators. Users' opinions were introduced through focus groups for the proposed set of indicators. All experts participating in the consensus meetings and Delphi study evaluated the importance of each indicator (from 1 to 10) and their degree of agreement (agree strongly, agree with modifications, or eliminate this indicator). Expert consensus was considered to have been reached when 80% strongly agreed or agreed with the inclusion of the indicator. In the implementation phase, we included users (with advanced colorectal adenocarcinoma, polyposis syndrome, CRC or a familial history of CRC) attending the program. Information was obtained from computerized medical histories and clinical documentation. In addition, health professionals linked to the program were surveyed. To calculate each indicator, its formula was computed and the indicator was then compared with a standard previously agreed on by the experts in the first phase. RESULTS: Expert consensus was reached in 30 indicators. In the implementation phase, 21 feasible indicators that showed the greatest simplicity and validity in identifying areas for improvement were calculated. Of these, two measured aspects related to accessibility, seven measured patient-centered care, five measured continuity of care, one measured patient safety and four evaluated clinical effectiveness. Overall, eight of the 17 indicators achieved the previously agreed standard of quality of care. CONCLUSIONS: The robustness and importance of the proposed set of indicators is supported by the wide participation of experts from distinct specialties and the adequate agreement reached. The present study serves to identify areas for improvement in the program. Periodic measurement of these indicators will allow the changes produced in this program and their utility to be evaluated and will aid assessment of other CRC prevention programs in the high-risk population.