Consumer satisfaction with involvement in drug research: a social validity study

Abstract

Objective: To assess the social importance and personal benefit attached to involvement in drug research for participating families.

Method: Parents of children with mental retardation or borderline IQ who took part in two drug studies were surveyed by mail 4 weeks after their involvement. The questionnaire addressed the acceptability of study procedures and satisfaction with study outcomes ("social validity").

Results: Forty (63.5%) of 63 families responded to the survey. In all, 83% felt that their questions were satisfactorily answered regarding the role of medication for their children, and 88% were satisfied with the individual conclusions reached regarding pharmacotherapy for their children. Virtually all parents believed that the study assessments used were important, and 88% indicated that they would join the study again if faced with the same choices.

Conclusions: These parents appear to have found the research experience to be of practical benefit to them, and they were generally positive about their experiences. As this seems to be the only published study of the social or perceived validity of drug research, more surveys of this type are needed to assess consumer reactions to a broader array of research experiences.