The online patient decision aid has been available for a few years now. “Initially it was an idea from Australia that we brought to the Netherlands,” Jacqueline explains. “It wasn’t just a matter of translating texts: everything has been developed and tested exclusively for the Dutch situation. Of course we have flyers available, and the internet provides plenty of information, but it’s useful to offer one reliable source containing information about their decision, options, and experiences from other patients.”
Because, Jacqueline explains, there usually are decisions to be made. “Women can often choose between an immediate breast reconstruction or opt-out. Women who don’t have a reconstruction done, can have one done later, after their treatment. There are plenty of reconstructive options nowadays, all with their own pros and cons that have a different impact on everyone’s life.”
For her research, Jacqueline interviewed women who had faced this decision. “I noticed that there were many factors that play a role in the decision-making and that every woman views things differently. Some are trying to survive, don’t want to risk additional complications and recover as quickly as possible. Others want to retain the shape of their breast to preserve their feelings of femininity and don’t want to deal with external prosthetics.”
But not just the number of decisions can be stressful, promotor and professor of Psychology in Clinical Genetics by special appointment, Eveline Bleiker. It’s also the moment itself. “Don’t forget that many of these women just received their cancer diagnosis. They’re already going through a hard time. And then there’s time pressure. They often have a few weeks to make this decision that will impact them for the rest of their lives.”
The decision aid is intended to be completed at home, so patients can bring a printout to the consultation with the plastic surgeon. Eveline: “The decision aid doesn’t provide a recommendation. It’s a starting point for the conversation with the plastic surgeon. You can take your time to sort through your options and then discuss your preferences.”
For her PhD research, Jacqueline researched the efficacy of this decision aid. She analyzed the decision-making process and the quality of the choice. 250 women were part of the study. Through random selection, one group received the decision aid, or existing flyers in addition to standard care. “The decision aid made patients feel better prepared for the conversation with their plastic surgeon and the decision itself.” More than 1400 women have since used the decision aid. Jacqueline: “Over 80% state that they are happy. That’s a great result.”
Jacqueline defended her thesis on May 28. But, Eveline emphasizes, that doesn’t mean the study ends today. “We have several new studies, such as a follow-up study into the choices that women with a hereditary predisposition for breast cancer make. What did they do to minimize their risk? Did they have their breasts and/or ovaries preventively removed? What affected their choice and its timing? Did they adjust their lifestyle? And what kind of information or care did they feel was missing? We hope to be able to support more women in their choices surrounding minimizing their risk of developing breast cancer.”
This research was made possible in part by KWF Dutch Cancer Society