Research Profile - The deciding factor

As more people living with cancer turn to complementary therapies, a BC-based researcher is helping them make informed choices

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Dr. Lynda Balneaves recalls interviewing a breast cancer patient who was taking a particularly nasty-tasting herbal tea.

"A friend had dropped it off at her house," says Dr. Balneaves, a Canadian Institutes of Health Research (CIHR) New Investigator Award winner. "We asked her what it was like, taking it. She said, 'It's terrible. But I'm doing it for my friend because she needs to feel like she's doing something for me.'"

Dr. Balneaves tells the story to show how people's decisions about their cancer therapies can be almost as complicated as the disease itself. And when it comes to adding complementary and alternative medicine (CAM) to conventional care, things can get even more confusing.

"Our research has made us aware that we have to acknowledge the whole context of a person's life in providing information and supporting decision making," says Dr. Balneaves, an associate professor at the University of British Columbia. "There are people who are using CAM in the hope that they will help prevent a reoccurrence or that it may cure their cancer. But sometimes people are using these therapies to give hope to their family or friends."

Dr. Balneaves, principal investigator for the UBC/BC Cancer Agency Complementary Medicine Education and Outcomes (CAMEO) Research Program, is developing "decision support strategies" for people with cancer who are considering CAM-based therapies. And when it comes to cancer, CAM has become more the rule than the exception. Recent surveys suggest almost 80% of women with breast cancer use some form of CAM. Natural health products, such as vitamins, minerals and herbal remedies, are most popular, along with mind-body therapies such as relaxation techniques, guided imagery and meditation. Eastern therapies like acupuncture and qi gong are also increasingly popular.

While use of CAM therapies is increasing, people with cancer often don't know where to turn for solid information about them.

"We know that many people get their advice from family and friends," says Dr. Balneaves. "That's not to say it's bad information, but it's often not evidence-informed. Or they could be going to a health food store and talking to a 20-year-old clerk who has the best of intentions but isn't necessarily trained to provide information about what supplements could be helpful for people living with cancer. And many people turn to the internet, where they're often overwhelmed and struggle to separate what's credible from what's not."

Partly on the strength of her CIHR-funded research, Dr. Balneaves received a $1-million grant from the BC-based Lotte and John Hecht Memorial Foundation to start CAMEO and begin developing decision support programs. She also received a $560,000 grant from the Canadian Breast Cancer Research Alliance to develop a decisional aid for women experiencing menopausal symptoms after breast cancer.

"We're one of the rare research programs that is having an immediate impact on cancer care. We're providing services and evaluating them within a research model to fill a gap in health care."

Almost 500 patients have participated in CAMEO programs by taking part in survey research, attending group education sessions, or meeting one-on-one with research nurses. CAMEO also makes conference presentations and conducts workshops to raise awareness among conventional health care providers about evidence-based CAM therapies.

"Being a decision support program and an information resource, we're taking the evidence that's out there on CAM, synthesizing it and translating it to patients, to family members and to health care providers."

How CAM decision support works

The decision support strategies that Dr. Balneaves and her team are developing are aimed at:

• helping patients understand the evidence that exists – or is absent – for specific CAM therapies;
• showing them where to find credible information about CAM; and
• supporting them in making decisions about CAM that fit with their beliefs and values.

Says Dr. Balneaves: "The strategies basically help patients answer the questions that we know from our research are the top learning needs: 'Will it work? 'Is it safe?' and 'When should I use CAM during my cancer journey?'"

To have somewhere to go

When Robin Fried found out she had breast cancer four years ago, she felt confident that "Western medicine knew how to kill my cancer cells."

But she also wanted to know how CAM therapies might help her heal. There was plenty of information available – but how much of it was reliable?

"As soon as you are diagnosed, everyone has suggestions for you and all of it is meant to be helpful," says Ms. Fried, a 63-year-old former city planner who lives in Vancouver. "But to have somewhere to go for credible information and someone you can actually talk to about your particular case – that's something that's been desperately needed for years."

Through the BC Cancer Agency, Ms. Fried found courses on therapeutic touch and mindfulness meditation and has since taken up yoga. But she did it on her own. That's why she's glad that newly diagnosed cancer patients now have CAMEO to turn to for guidance.

"It means there is credible information available," says Ms. Fried, who has accepted an offer to become a patient representative on CAMEO's steering committee. "It's a starting point to pursue your own interests and is a place to ask questions."

Ms. Fried sees CAM therapies as integral to the healing process.

"The anxiety and stress of being diagnosed with cancer is, as you can imagine, huge. Anything that supports relaxation and staying grounded encourages healing."

"Only about 50% of people actually have a discussion with their oncologist or their primary care provider about the CAM therapies they're using. On the other hand, we also recognize that many doctors and nurses get very little training, so they have a difficult time having discussions with patients about what therapies might be safe and helpful. We're trying to develop programs to address both sides – both the patient and the health care provider."
-- Dr. Lynda Balneaves