C Taylor1, P Trowbridge, C Chilvers. 1. Section of Epidemiology, Institute of Cancer Research, Belmont, Surrey, United Kingdom.
Abstract
STUDY OBJECTIVE: The aim was to ascertain whether personal interviews carried out for cancer case-control studies cause stress to participants. DESIGN: Retrospective postal questionnaires were sent to women at least three months after interview for a case-control study of the aetiology of cervical cancer. The questionnaire covered attitudes to taking part in the study, stress engendered by participation, whether any particular questions were distressing, factors relevant to the decision to participate, and the role of their doctor with respect to participation. SETTING: South East and South West Thames health regions, United Kingdom. PATIENTS: Patients were women aged 20-45 years at diagnosis with invasive cervical cancer, and population based controls. MEASUREMENTS AND MAIN RESULTS: The response rate was 90%. Nearly all respondents were glad they had participated, while only 2/226 regretted taking part. Half the respondents (115/226) perceived some actual benefit from taking part. The interview carried out in the case-control study was both long and detailed and included topics such as numbers of sexual partners and history of sexually transmitted diseases. As expected, the questions causing most concern to interviewees were those on number of sexual partners, but only 13% of participants were bothered by these questions and only 4% felt inclined to terminate the interview early. CONCLUSIONS: The lack of evidence of stress caused by this potentially difficult interview suggests that, in the hands of experienced interviewers, stress is unlikely to be caused by participation. Many participants felt that they had benefited from taking part. Doctors and ethics committees should find these results reassuring.
STUDY OBJECTIVE: The aim was to ascertain whether personal interviews carried out for cancer case-control studies cause stress to participants. DESIGN: Retrospective postal questionnaires were sent to women at least three months after interview for a case-control study of the aetiology of cervical cancer. The questionnaire covered attitudes to taking part in the study, stress engendered by participation, whether any particular questions were distressing, factors relevant to the decision to participate, and the role of their doctor with respect to participation. SETTING: South East and South West Thames health regions, United Kingdom. PATIENTS: Patients were women aged 20-45 years at diagnosis with invasive cervical cancer, and population based controls. MEASUREMENTS AND MAIN RESULTS: The response rate was 90%. Nearly all respondents were glad they had participated, while only 2/226 regretted taking part. Half the respondents (115/226) perceived some actual benefit from taking part. The interview carried out in the case-control study was both long and detailed and included topics such as numbers of sexual partners and history of sexually transmitted diseases. As expected, the questions causing most concern to interviewees were those on number of sexual partners, but only 13% of participants were bothered by these questions and only 4% felt inclined to terminate the interview early. CONCLUSIONS: The lack of evidence of stress caused by this potentially difficult interview suggests that, in the hands of experienced interviewers, stress is unlikely to be caused by participation. Many participants felt that they had benefited from taking part. Doctors and ethics committees should find these results reassuring.