Development of a patient decision aid for breast reconstruction after mastectomy: patient perspectives on decision making

Introduction: Over the past decades shared decision making has gained increased awareness by using a wide range of initiatives from passive information provision to more active initiatives seeking to support patients. The shared decision project in Catalonia was designed to address the challenges to improving decision making process. In this context patients need complete and unbiased information to make an informed and shared decision. Patient decision aids educate patients and emphasize the availability of multiple treatment options and the role of the patient in this process.

Objective: To design a patient decision tool for breast cancer women who have to undergo breast reconstruction after mastectomy.

Methods: A qualitative study design involving focus groups and in-depth interviews with women was carried out. The recorded interview and focus group discussions were transcribed and analyzed using “framework analysis”. Five areas were explored: 1) Impact of cancer diagnosis, 2) Information received about the surgery, 3) Post-surgery experiences, 4) Fulfilment of expectations and 5) Satisfaction with the decision.

Results: A total of 20 breast cancer women took part in a qualitative study. Four women were assessed through an in-depth interview and the other 16 women were divided into two focus groups (8 each). Cancer diagnosis was overwhelming for most of the women. For women, information received was considered good and sufficient, but the study shows that after the post-surgical period, more complaints related to pain and other complications appear. The expectations about immediate breast reconstruction were linked with the final aesthetic results. Some women would choose to do the same procedure again despite the complications but some other women would not choose the same option because of the complications and they regret their decision.

Discussion: There is no clear and unanimous position among women about whether they would go through immediate breast reconstruction again and whether the surgery has fulfilled their expectations. However, the results of the qualitative study showed that patients need complete, unbiased and appropriate information in order to be able to make an informed and shared decision.

Conclusions: The patient decision aid will provide information about the health condition, treatment options, frequently asked questions and patient experiences based on preferences and values of women who had undergone breast reconstruction after mastectomy. It will facilitate the information delivering process to patients and will promote patient empowerment for shared decision making and encourage patients in discussing with their doctors reasonable treatment and decision options, including the choice to do nothing.

Suggestions for future research: There are however still some challenges to cope with in the future such as the implementation in daily routine practice. It will be relevant for this to identify the main barriers and facilitators to overcome its successful implementation in the decision making process.