In the Journals

Study: Rheumatology patients in UK lack information about clinical trials

Patients at a single rheumatology tertiary center in the United Kingdom gave correct responses about half of the time, on average, to questions about clinical trial details, but respondents who had higher knowledge about clinical trials were more willing to participate in research, according to recently published study findings.

A questionnaire about clinical trials was developed by researchers at the University College Hospital, London, based on a similar questionnaire used to query cancer patients about perceptions, education and beliefs about clinical trials. The survey was completed by 85 volunteers recruited by their rheumatologist. Median age of respondents was 51 year; 22 were men, 25 were new patients and 60 were under regular follow-up for management of rheumatoid arthritis (RA), osteoporosis, osteoarthritis and other conditions.

The survey consisted of two demographic questions; two opinion questions based on a five-point Likert scale; 19 questions with true, false or unsure responses; and one open question, which asked the respondent what would be helpful in gaining a better understanding of clinical trials. Patients responded to the survey without any guidance.

The mean number of correct responses to the 19 questions about clinical trial knowledge was 10.5, with a median of 11 correctly answered questions per questionnaire. Most patients correctly responded that a clinical trial is a test of an experimental drug (77.6%) and that the use of statistics informs researchers about whether an experimental treatment is better than currently available therapies (76.5%). A majority were aware that a consent form explains the known risks and benefits of an experimental treatment in the trial (75.2%) and that evidence of efficacy in vitro is insufficient evidence for use in humans (74.2%). However, questions about the definition of placebo, standard vs. experimental treatment and randomization yielded uncertainty; about half of patients responded “I don’t know” to each question, and only 41.2% understood that participation in a clinical trial may require more hospital visits than standard treatment. A belief that physicians received payments for recruiting trial participants was seen in 54.1% of respondents, according to the researchers.

Patients with higher levels of education had more correct answers than participants with lower education and were more willing to participate in clinical trials (87.5% vs. 48.2%; however, regardless of education, patients who agreed or strongly agreed with the statement, “I have a good understanding about how clinical trials work,” were less willing to participate in a clinical trial than patients who disagreed with the statement. - by Shirley Pulawski

Disclosure: Cuirtin reports having received funding from a U.K. Biomedical Research Council grant. The other authors report no relevant financial disclosures.

Patients at a single rheumatology tertiary center in the United Kingdom gave correct responses about half of the time, on average, to questions about clinical trial details, but respondents who had higher knowledge about clinical trials were more willing to participate in research, according to recently published study findings.

A questionnaire about clinical trials was developed by researchers at the University College Hospital, London, based on a similar questionnaire used to query cancer patients about perceptions, education and beliefs about clinical trials. The survey was completed by 85 volunteers recruited by their rheumatologist. Median age of respondents was 51 year; 22 were men, 25 were new patients and 60 were under regular follow-up for management of rheumatoid arthritis (RA), osteoporosis, osteoarthritis and other conditions.

The survey consisted of two demographic questions; two opinion questions based on a five-point Likert scale; 19 questions with true, false or unsure responses; and one open question, which asked the respondent what would be helpful in gaining a better understanding of clinical trials. Patients responded to the survey without any guidance.

The mean number of correct responses to the 19 questions about clinical trial knowledge was 10.5, with a median of 11 correctly answered questions per questionnaire. Most patients correctly responded that a clinical trial is a test of an experimental drug (77.6%) and that the use of statistics informs researchers about whether an experimental treatment is better than currently available therapies (76.5%). A majority were aware that a consent form explains the known risks and benefits of an experimental treatment in the trial (75.2%) and that evidence of efficacy in vitro is insufficient evidence for use in humans (74.2%). However, questions about the definition of placebo, standard vs. experimental treatment and randomization yielded uncertainty; about half of patients responded “I don’t know” to each question, and only 41.2% understood that participation in a clinical trial may require more hospital visits than standard treatment. A belief that physicians received payments for recruiting trial participants was seen in 54.1% of respondents, according to the researchers.

Patients with higher levels of education had more correct answers than participants with lower education and were more willing to participate in clinical trials (87.5% vs. 48.2%; however, regardless of education, patients who agreed or strongly agreed with the statement, “I have a good understanding about how clinical trials work,” were less willing to participate in a clinical trial than patients who disagreed with the statement. - by Shirley Pulawski

Disclosure: Cuirtin reports having received funding from a U.K. Biomedical Research Council grant. The other authors report no relevant financial disclosures.