Informing subjects of epidemiologic study results

Parents of children with cancer appear to have use for the results of epidemiological studies in which they have participated, and do not appear to experience negative effects from such feedback. Researchers mailed research result summaries to 109 mothers whose children had brain tumors and who participated in the research, which attempted to identify parental risk factors for the children's cancer. Summaries were also mailed to 90 control mothers. All mothers completed a survey about their feelings after reading the research results. Overall, both groups reported that they understood the information and appreciated its value, and that they would recommend other parents to take part in such research. Mothers of the children with cancer were twice as likely to want a phone number to obtain additional information. They were also more likely to experience guilt and anger in response to reading the summary, but these feelings were of moderate intensity. Many of the mothers in both groups remarked on the inconclusive nature of the results.
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 and 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. Pediatrics 1996;97: 486-491; pediatric oncology, parents, communication, epidemiology.
In the past decade, epidemiologists have increasingly studied childhood malignancies and congenital anomalies and contributed knowledge about the development of these conditions. The subjects (usually parents) comprise a large and [...]