A New Tool to Help Patients Make Better Decisions After Cancer Surgery

When someone has major surgery for cancer, like in the abdomen or pelvis, they face a tough decision afterward: Should they take medicine to prevent blood clots, even after they go home? This medicine, called extended thromboprophylaxis, can be important, but it also has risks. To make the best decision, patients need to understand both the benefits and the risks.

Why Is This Decision So Important?

After major surgery, especially for cancer, there’s a higher risk of blood clots. These clots can be very dangerous if they travel to the lungs or other parts of the body. Taking medicine to prevent these clots can be lifesaving. But, like all medicines, there can be side effects, such as bleeding, which patients need to be aware of.

A New Way to Help Patients Decide

To help patients make informed decisions, researchers developed a tool called a risk-stratified patient decision aid. This tool is designed to guide patients through the decision-making process, giving them clear information based on the latest scientific research and their own health risks.

The idea is simple: When patients understand their risks and the potential benefits and harms of taking the medicine, they can make better choices that fit their personal preferences and health situation.

How Does the Tool Work?

The decision aid takes into account a patient’s individual risk of blood clots, which is measured by something called the Caprini score. This score helps doctors determine how likely it is that a patient might develop a clot after surgery. Based on their score, patients receive specific information that’s relevant to them. The tool also helps patients weigh their options, so they feel confident and prepared to make a decision.

What Did the Study Find?

The researchers tested this decision aid with 17 patients who were having major surgery for cancer. They found that using the tool made a big difference:

• Less Confusion: Patients felt less uncertain about what to do. Their decisional conflict scores dropped significantly after using the aid.

• More Confidence: After using the tool, patients felt more confident in the decisions they were making. They felt well-prepared to choose the option that was best for them.

• Better Knowledge: The patients’ understanding of the risks and benefits improved, with knowledge scores increasing from 50% to 75%.

Why Does This Matter?

Making decisions about health can be really hard, especially when the stakes are high. This decision aid gives patients the information they need in a way that’s easy to understand, helping them feel more in control of their health choices.

What’s Next?

While the results are promising, the researchers believe more work is needed. They want to see how well this tool works in different settings and with more patients. The goal is to make sure that every patient who needs this kind of decision-making help can get it.

Final Thoughts

This new decision aid is a great example of how research can directly help people. By providing clear, personalized information, it empowers patients to make choices that are right for them, leading to better outcomes and less stress during a challenging time.

This tool represents a step forward in patient care, making sure that decisions after cancer surgery are based on the best available evidence and truly reflect what’s important to each patient.

View the full paper here.

CCMB scientists as part of the TFRI Marathon of Hope Cancer Centres Network

Sally Nystrom featured in CCMB Sept 2024 The Navigator Newsletter

Sally Nystrom, a partner on our research team, was featured in Sept 2024 newsletter. Check it out here.

Making Clinical Research Easier to Understand: New Guidelines for Consent Forms

When people join a clinical research study, it's important that they understand what they're signing up for. But sometimes, the information they receive can be hard to read and confusing. To fix this, a group of experts has come up with new rules to make these documents easier for everyone to understand, especially for those who might have trouble with reading.

Why Is This Important?

Before anyone can join a research study, they need to give their "informed consent." This means they agree to participate after being told all the important details about the study. But if the information is written in a complicated way, it can be hard for people to really understand what they’re agreeing to. This can make them feel unsure or even stop them from joining the study.

To help, experts including doctors, patient advocates, and plain language editors have created a set of guidelines. These guidelines are designed to make the information in research studies clear and easy to read for everyone.

Key Changes to Make Consent Forms Better

The new guidelines focus on five main areas to improve consent forms: Layout, Formatting, Content, Language, and Readability.

1. Layout: The layout of the documents should be easy on the eyes. Instead of being packed with text, the forms should be organized like a booklet, with enough space between lines and clear, simple images to help explain ideas. The paper should be easy to read on, without too much shine that could make it hard to see the words.

2. Formatting: The text should use a simple font, like Arial or Verdana, and be big enough to read comfortably. It’s important not to use all capital letters because that can make the words harder to recognize. Headings and subheadings should break up the text so it’s easier to follow.

3. Language: The language used should be simple and straightforward. Sentences should be short, with no more than 15-20 words. Any difficult words should be explained right away. Instead of long paragraphs, information should be broken into bullet points or numbered lists to make it easier to understand.

4. Content: The content should be relevant to what the person needs to know to make a good decision about joining the study. The text should use active words, like "Take the medicine twice a day" instead of "The medicine should be taken twice a day." Examples from everyday life should be used to explain difficult ideas.

5. Readability: Before these forms are used, they should be tested to make sure they are easy to read. This could mean having someone unfamiliar with the study read it or using tools to check if the language is simple enough.

A Big Step Forward

These new guidelines are an important step in making sure everyone can understand the information they receive when they join a research study. By making these forms easier to read, more people can feel confident about participating in research that could help them and others.

The goal is to make clinical research more inclusive and ethical, so everyone has the chance to be involved, no matter their reading level or background. These changes will help make sure that everyone is fully informed and can make the best decision for themselves.

Read the full article here.

PREPPP Award Announcement in CCMB Research News

PREPPP Award Orientation and Celebration

 Congratulations to Dr. Megan Delisle and all the recipients of the Preparing for Research by Engaging Public and Patient Partners (PREPPP) award, funded by the Center for Health Care Innovation

 The PREPP award provides financial and advisory support to researchers, students, and community organizations so they can engage patients and members of the public as partners in the early stages of their health research (including the priority-setting, design, and grant development phase of a project).

Check out the resources provided by the Center for Healthcare Innovation here.

Left to right: Sally, Celine, Caroline, Bev, Megan and Jim.