Trudy van der Weijden and Marjolein Smidt Trudy van der Weijden and Marjolein Smidt Paul van der Veer

Decision-making support for breast cancer patients and surgeons

In Body
Written by  Graziella Runchina Wednesday, 10 June 2015 14:42

Women who are diagnosed with breast cancer have to make some tough decisions. In April, the Maastricht University Medical Centre+ (MUMC+) launched the Breast Cancer Decision Aid for patients with early stage breast cancer. The aim of this digital tool is to help women make an informed choice between breast-conserving therapy and a mastectomy with or without breast reconstruction. “International studies show that patients are less likely to regret their decision and more likely to be satisfied with their treatment when they get the chance to make choices together with the doctor and the treatment team”, says the project leader Trudy van der Weijden. “We’re convinced that using the Breast Cancer Decision Aid improves the dialogue between doctor and patient.”

 

“Women with early stage breast cancer have a tumour in their breast, possibly with limited metastasis to the lymph nodes in the armpit”, says Marjolein Smidt, an oncology surgeon at the MUMC+. She played a key role in initiating this pilot project, which came about thanks to funding from the international breast cancer charity Pink Ribbon. These patients, Smidt explains, are typically given the choice between a mastectomy with possible reconstruction on the one hand, and breast-conserving surgery followed by radiotherapy on the other. “The chance of survival is the same, so there’s no one best solution.”

The dilemma
“We developed the tool to simplify the decisions that patients have to make before starting treatment”, explains Van der Weijden. “Many women are faced with a huge dilemma: given the same chance of survival, do I prefer breast-conserving therapy or a mastectomy? If I choose the mastectomy, do I want a breast reconstruction? And if so, do I want it done now or later? Of course, you only start thinking about these questions after you’ve been diagnosed and heard the bad news from your doctor.”

Information overload
Smidt continues: “Patients receive a lot of information during that conversation, and it's unclear how much of it they actually remember. In addition, this information is subjective: every doctor has their own way of communicating with their patients. E-health can help doctors and patients arrive at informed decisions together. It’s all about using new information and communication technologies to support or improve health and healthcare, and it has a number of advantages. The language used to present the information is clear, understandable and neutral, so everyone interprets it the same way. And patients can consult it from the comfort of their own home.”

Joint decision making
“There’s more and more evidence that patients want to be involved in the treatment choices they can or have to make with their doctors, especially once they’ve been fully informed about the dilemmas”, says Van der Weijden. “These days patients have more knowledge and are often more articulate than they used to be. You can also see this in the consultation room.”

In the pilot study, women can log in to the Breast Cancer Decision Aid at home and go through the information either on their own or with family members. Smidt: “This allows them to weigh up the various considerations one step at a time. For example, there are different options for reconstruction. The tool explicitly describes these different options, giving users the chance to think about these at their own pace.

“By going through the entire decision tree, the patient gains insight into all the options as well as her own considerations and needs. She can type in her questions, concerns and wishes. And at the end she can make a printout summarising her considerations. She can then take this with her to her next appointment at the hospital, which provides a useful point of departure for talking with the doctor. But it also helps us to gain insight into the things that are important to patients. The art, ultimately, is to coach the patient through the decision-making process. It's about not panicking, but making an informed decision.”

Subjective
“Doctors tend to think they do a good job at involving their patients in the decision-making process”, says Van der Weijden. “But it turns out that women with breast cancer often receive subjective information, and aren't always encouraged to speak their minds about their preferences. Shared decision-making approaches and tools can help patients figure out what their preferences are. Because at the end of the day, we want patients to be as satisfied as possible about their final decision.”

So do e-health in general, and the Breast Cancer Decision Aid in particular, diminish the role of the doctor? “On the contrary”, says Van der Weijden. “When e-health is used correctly you see that the questions asked are the same as those that arise in the consultation room. But it helps to bring the communication between doctor and patient to a higher level. The patient has done some ‘homework’ and has a certain amount of background information about the treatment options already. This helps you to zoom in on the key issues faster.”  

Collaborating with the MUMC+ on this project are the Leiden University Medical Center (LUMC), Amsterdam’s Academic Medical Center (AMC) and the Alexander Monro breast cancer hospital. After four months, the pilot will be thoroughly evaluated, including face-to-face interviews with women who have used the decision aid as well as their healthcare providers.

According to Van der Weijden and Smidt, e-health could really take off in the Netherlands if ways can be found to implement it in daily clinical practice. To this end, the help of professional designers is needed; they collaborated with the company ZorgKeuzeLab to come up with the Breast Cancer Decision Aid. “In the US and England, decision aids are a standard part of the treatment programme in breast cancer centres. We hope to see them being taken up here too.”

Trudy van der Weijden (1962) has been professor of Implementation of Clinical Practice Guidelines at UM’s Department of General Practice since 2010. She leads the CAPHRI research programme Implementation of Evidence and the Pink Ribbon project Decide Together (Samen Beslissen). Wilma Savelberg is working on her PhD research and conducting follow-up research in the Pink Ribbon project.

Marjolein Smidt (1972) is an oncology surgeon at the MUMC+ and affiliated with the GROW School for Oncology and Developmental Biology. She is the Principal Investigator on several projects seeking to develop customised treatment plans for breast cancer patients.

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