Abstract
Aims: Beyond care to ensure there is no untoward inducement or coercion, rarely is consideration given to the reasons people participate in medical research. The present study aimed to explore this within a general practice based survey of eating disorders in women. Further aims were to assess the adequacy of the information provided to participants, and any perceived psychological impact from their involvement.
Methods: The survey comprised two stages, first, the subject sample was screened for bulimic eating disorders by questionnaire, and second, likely cases were interviewed to confirm diagnosis and evaluate subject characteristics. A random sample of those who did not meet criteria for interview were interviewed. At the close of the interview respondents were asked a single qualitative question about their reasons for participation. Following the interview, respondents were asked to complete a confidential questionnaire regarding the adequacy of the information and any effects of the interview. This was returned by mail directly to the investigators (not the interviewer).
Results: 510 women patients, mean age 36.8 years (SD 11.7, range 16–59 years) who were consecutive general practice attendees were screened by questionnaire and 73 were interviewed. At interview 26 had an eating disorder diagnosed, and subjects were offered follow-up advice and care provided by one of the investigators (PH).
All respondents provided a reason for participation, 37 (51%) a single reason, 34 (47%) two reasons and two three reasons. The commonest reason was a general altruism, namely to help the survey, or to help people with eating disorders, or the like (n = 48, 64%). The next most common was to obtain some help for themselves (n = 25, 34%). Seven (all who had been selected randomly for interview) participated in order to specifically help someone they knew with an eating disorder. Seventeen participated out of general interest in the subject and one because she “didn't like to say no”.
All of the 45 (62%) respondents who returned the questionnaire confirmed that the information they were told about the study reflected what they were asked to do. Thirty-five (48%) did not think the study made any difference to the way they felt about themselves or their life in general, 10 (14%) felt better, and no-one felt worse. Only 13 (18%) reported that the survey had changed their eating habits.
Conclusions: In this study a general altruism was the commonest reason for participation. However, over a third took part in order to obtain some help specifically for themselves or for someone they knew. There were no reported general adverse psychological effects of the survey. Medical investigators should be aware that survey subjects in non-treatment studies, may be seeking specific help or treatment.