Consumer health information: The role of breast cancer associations

Background. Providing information for patients is currently a growth need for health professionals, medical journals, and consumer associations. Despite several patients or consumers associations being active in Italy, scarce evidence is available on the volume and type of activities carried out. A national survey was carried out to investigate the volume and the nature of phone requests for information addressed to associations belonging to the Italian Forum of EUROPA DONNA, an European movement active in 28 countries, working to raise public awareness of breast cancer. Methods. A structured questionnaire was sent to all EUROPA DONNA breast cancer associations to be filled in by the persons in charge for delivering the telephone information. Results. Of the 87 breast cancer associations contacted, 41 (47%) participated to the survey, completing a total of 2383 questionnaires for 4251 kinds of information. Most of the people who called were women and about 57% were breast cancer patients. A wide range of information were required: 29% on prevention, 22% on practical problems of daily life, 23% on services actually offered by breast cancer associations, 10% on psychological counselling, and finally 14% for advice on primary therapy and follow-up. In more than one-third of phone calls, people were looking for opinion from women who personally experienced a breast cancer. Conclusion. This survey shows that breast cancer associations receive daily requests of information and convey a wide range of information. The findings underline the need to create meaningful partnership between health professionals and patient's associations in the complex field of information and communication.