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Booklet about clinical trials informs and empowers patients

Fuseworks Media
Fuseworks Media

Waikato Cancer and Blood Research Trials Unit has developed a booklet which demystifies terminology and empowers patients to ask questions that will help them decide whether to participate in a clinical trial.

The booklet "Clinical trials patient information" sets out in a clear and engaging way the standard process of a clinical trial within the department, what to expect, explanations of common "jargon" and clinical terms, and information about services available to help patients navigate the complex health system. The booklet also shares stories from patients who have participated in clinical trials.

Wendy Thomas, charge nurse manager of the Waikato Cancer and Blood Research Trials Unit, says clinical trials are about looking for new treatments that may improve the quality of life and patient outcomes. "Current drugs and or procedures that are now a standard part of care are available because of previous clinical trials and the patients who participated in them," she explains.

Lindah Chikazhe, a nurse coordinator who has worked in the unit for 10 years, led the development of the booklet as part of a practicum project to complete a Masters of Nursing degree.

"We set up a group to help pull it all together and the variety of experience in that group provided diversity in the content and layout of the booklet," she says. Consumer advocacy groups, clinical nurse specialists, clinicians, patients and Waikato DHB’s Te Puna Oranga (Māori health service) were among those consulted as part of the process.

A clinical trial is dependent on having patients consenting to participate and this is where Chikazhe’s booklet will really help by complementing the formal patient information and consent form, which is not always easy for patients to understand, with user-friendly written information.

Feedback from patients has been very positive to date. It is a great example of health literacy in action - translating specialised information into something people can understand, which underpins truly informed consent if they decide to participate in a clinical trial.

Chikazhe developed an interest in health literacy following the results of New Zealand’s first national cancer care survey, published in the New Zealand Medical Journal in November 2010. The survey found that patients rated their outpatient cancer care experiences as positive overall but identified the importance of presenting information to patients in a way they can relate to, understand, and that supports their decision making process.

"We cannot take for granted that patients understand and take in what we say to them," Chikazhe says. Patients can often feel ashamed and embarrassed to ask their doctors to repeat or explain instructions and information. Their lack of understanding may not be obvious when a person attempts to maintain their dignity.

"In the future, efforts could focus on taking advantage of technology, such as short videos, apps and podcasts, to deliver information to patients in more flexible and culturally appropriate ways," she says.

Chikazhe presented her work at a Melbourne conference in August 2019. The poster presentation of her research received a lot of interest and enquires.

She acknowledges the work of the other members of the project team (nurse coordinators Anne Liggins and Jenny Boyd, and research coordinator Claudia Romano), as well as CNM Wendy Thomas for her support.

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