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 About 85 percent of respondents in the new study said clinical
research is important to developing new drugs, and 90 percent
thought participating in a trial is generally safe. But only 18
percent had actually done so, researchers report in JAMA Network
Open.
"Patient enrollment is one of the biggest causes of drug development
delays, and one way to address that is by raising awareness among
patients and educating them about research," said study leader
Annick Anderson, director of research services at the Center for
Information and Study on Clinical Research Participation in Boston,
Massachusetts.
"The end goal is to accelerate the drug development process and
bring new treatments to patients faster," she told Reuters Health by
phone.
Anderson's team surveyed more than 12,000 people, including about
2,200 who had participated in clinical research studies before,
about their perceptions of clinical research, how they had received
information about research studies and what barriers to joining a
clinical trial they had experienced.
Although most participants saw clinical research as important to the
discovery and development of new medicines, more than half were
unable to name a place where studies occurred. In addition, 45
percent said these trials are rarely considered or discussed as an
option when talking to their doctors.
Overall, the respondents saw clinical trial participation as
inconvenient and burdensome. Among those who had participated in a
trial, about half said it disrupted their daily routine.
"We want to involve patients and caregivers as we develop trial
protocols and take a look at all of the procedures and assessments
we require," Anderson said. "We realize it's a huge commitment to
ask of someone, and we're taking a second look at reducing that
burden of participation."
Previous studies have focused on researchers' and clinicians'
perspectives of clinical trial research and barriers, often with
little attention to patients' priorities, said Susan Bartlett of
McGill University in Montreal, who wasn't involved in the study.
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Even today, many drug trials include few patient-reported outcomes
such as fatigue or gastrointestinal distress, she added.
"Fundamentally, we undertake clinical trials to improve the lives of
patients," she told Reuters Health by email. "Our ability to conduct
trials is reliant on the altruism of patients and their trust that
the trials we design are safe and essential to advancing scientific
knowledge and clinical care."
Bartlett and colleagues have held focus groups in the U.S., Canada
and Australia for patients with inflammatory arthritis. They found
that what doctors called "nuisance side effects" such as fatigue,
diarrhea and gastrointestinal pain were common, persistent and
disabling.
Even if a medication helps arthritis, the tradeoff may not matter if
the patient feels tired or can't think clearly, she said.
"Patient-centered research is still in the earliest stages,"
Bartlett added. "Our work suggests that the cumulative effect of
medication side effects can have a considerable impact on quality of
life and often leads patients to reduce or discontinue medications."
Federal groups are looking for ways to make drug development more
patient-focused, which includes identifying the benefits, risks and
day-to-day impact of treatments from the perspective of patients.
"Don't hesitate to speak up," Bartlett said. "Tell us what we're
doing well, and where there's room for improvement from the patient
perspective. We'll all benefit."
SOURCE: https://bit.ly/2OVdz5g JAMA Network Open, online October 5,
2018.
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