Involving patients with depression in research: survey of patients' attitudes to participation

Abstract

Clinicians report barriers to involving their patients in mental health research and have concerns that participation may have negative effects. To investigate patients' views on participating in a primary care randomised controlled trial (RCT) comparing two antidepressant drugs. Cross-sectional survey. General practices, England. Six hundred and one trial participants were surveyed about their reasons for, and experience of, participating. The questionnaire was completed by 252/601 (42%) participants. The most influential factors determining participation were: wanting to help others with depression (94%, 95% confidence interval [CI] = 90 to 97%) of responders rated this as 'important' or 'very important'); friendly researchers (94%, 95% CI = 90 to 96%); and interest in the research (88%, 95% CI = 83 to 91%). Most were glad they took part and would consider participating in future research. Ninety-six per cent (95% CI = 92 to 98%) reported that their confidence in their GP had increased or remained unchanged since referral. Qualitative analysis of free-text responses indicated that patients found participation beneficial and liked: being altruistic, doing something positive, feeling supported by the researchers, and having time to talk. Many gained understanding of their depression and valued feedback on their progress. A minority reported negative views, which commonly related to taking antidepressants, and answering questionnaires. GPs have a vital role in facilitating patient involvement in research but report barriers to referring depressed patients to RCTs. However, this data suggests that patients are willing to participate and many find this beneficial. Understanding attitudes to participation in mental health research is a crucial step in designing trials that are more acceptable to patients and GPs. This will strengthen the evidence for therapeutic approaches in primary care.