Participation behavior of bladder cancer survivors in a medical follow-up survey on quality of life in France.

The objectives were to ascertain the sociodemographic background of bladder cancer survivors acting on their participation behavior to a medical follow-up survey. This population-based quality of life (QOL) survey was realized by mail with 201 survivors (M:F = 171:30, median age = 74 years, range 33-99) randomly selected from the 1731 patients diagnosed between 1990 and 1994 in two regions of France. Response rate was 47.3%. Female and younger survivors were more receptive to the survey than were males and older survivors. Furthermore, survivors who had experienced a cystectomy were more responsive than those who did not. Similarly, the length of time since a major treatment was significant, with a shorter interval associated with a better response. The missing item rate in the QOL questionnaire was 13.8%. Other variables were not significantly associated with acceptance of the survey. Missing items among the responders were found more often in the sub-scale of social/familial well-being (15.6%). The older and male subjects left more questions blank. The reason for this low response rate can be categorized to the following three points: (1) Physically and psychologically not motivated to answer, (2) sensitive and private content of the question, and (3) methodological problem. Clearer concepts of the research would have helped the participants understand the objectives and better relate to the survey. Subsequently, these three issues should be given more attention in organizing questionnaire survey for improved participation rates in future studies.