Informing subjects of epidemiologic study results. Children's Cancer Group.

OBJECTIVE: To assess the feasibility and process of providing feedback to parents regarding the results of epidemiologic research, in particular to look at the importance and clarity of the information provided, parental reactions to the results, and utilization of the data provided.
METHODOLOGY: Parents who participated in an epidemiologic study of pediatric brain tumors (patient and control mothers) were sent a letter summarizing the results of the study and the Parent Study Results Survey to complete and return. The final sample used for analyses was 109 (patient) and 90 (control) mothers. Analyses were conducted to determine differences between patient and control mothers and differences among subsets defined by educational level and vital status of the patient.
RESULTS: Mothers rated the importance and clarity of the information very highly, although patient mothers were more likely than control mothers to want more information and a telephone contact. Patient and control mothers were similar in reported sadness, anxiety, and being overwhelmed, but patient mothers felt less satisfied and relieved. Patient mothers expressed feeling more guilt nad anger than control mothers, although even the levels among the patient mothers were only moderate. Close to half of all mothers commented on the inconclusiveness of the study results. Nearly all mothers indicated they would suggest that other parents participate in epidemiologic research.
CONCLUSIONS: It is valuable to many parents that they receive information about results of research in which they have participated. We found little evidence of strong negative effects to a detailed feedback letter. We recommend that evaluative data be used to guide the process of informing research participants about study results and that investigators consider making feedback letters a standard part of research protocols.