Development of a patient decision aid for patients with breast cancer who consider immediate breast reconstruction after mastectomy

Abstract

Purpose: The aim of this study was to develop a patient decision aid (pDA) that could support patients with breast cancer (BC) in making an informed decision about breast reconstruction (BR) after mastectomy. Methods:The development included four stages: (i) Establishment of a multidisciplinary team; (ii) Needs assessment consisting of semi-structured interviews in patients and a survey among healthcare professionals (HCPs); (iii) Creation of content, design and technical system; and (iv) Acceptability and usability testing using a think-aloud approach in patients and interviews among HCPs and representatives of the Dutch Breast Cancer Patient Organization.Results: From the needs assessment, three themes were identified: Challenging period to make a decision, Diverse motivations for a personal decision and Information needed to make a decision about BR. HCPs valued the development of a pDA, especially to prepare patients for consultation. The pDA that was developed contained three parts: first, a consultation sheet for oncological breast surgeons to introduce the choice; second, an online tool including an overview of reconstructive options, the pros and cons of each option, information on the consequences of each option for daily life, exercises to clarify personal values and patient stories; and third, a summary sheet with patients' values, preferences and questions to help inform and guide the discussion between the patient and her plastic surgeon. The pDA was perceived to be informative, helpful and easy to use by patients and HCPs. Conclusion:Consistent with information needs, a pDA was developed to support patients with BC who consider immediate BR in making an informed decision together with their plastic surgeon.

Unpacking Gender for Flat Breast Cancer Survivors Assigned Female at Birth: A Methodological Application of Visually Informed, Critical Discursive Psychology

“…As early detection and advanced cancer treatments mean that breast cancer survivors are living longer, there may be long-term effects on their physical, psychological, and sexual wellbeing resulting from their decisions about whether to go "flat" or pursue reconstruction (Shammas et al 2022). Yet, the median time period between breast cancer diagnosis and surgery is 5 weeks (Ter Stege et al 2022), and survivors have described feeling overwhelmed by their diagnosis and having to make such an important decision when they may not "feel like themselves" and like their breast cancer trajectory is a "roller coaster" (Ter Stege et al 2022, p. 235). Survivors often must decide quickly whether to take surgical steps to reconstruct their breast tissue.…”

“…Survivors have expressed how challenging it is to make an informed decision about whether to pursue reconstruction as they are only beginning to process their cancer diagnosis (Giunta et al 2021;Holland et al 2016). Survivors who have finished treatment advise those who are newly diagnosed to "take your time" and "don't make the decision quickly" (Giunta et al 2021, p. 4), noting that the process of integrating information from the medical team with personal values warrants time and energy (Ter Stege et al 2022). Survivors describe how there may be a perception of urgency around reconstruction decisions given how quickly surgery follows diagnosis (Ter Stege et al 2022), but in fact, they find relief in learning that theoretically, reconstruction can happen at any point in time (Giunta et al 2021).…”

Supporting Shared Decision-making About Surveillance After Breast Cancer With Personalized Recurrence Risk Calculations: Development of a Patient Decision Aid Using the International Patient Decision AIDS Standards Development Process in Combination With a Mixed Methods Design

“…ZorgKeuzeLab has developed and implemented over 25 PtDAs and therefore has high expertise. For the development of the PtDA, the International Patient Decision Aids Standards (IPDAS) development process [18] was combined with a mixed methods design inspired by the development process of PtDAs previously developed in collaboration with ZorgKeuzeLab [19][20][21]. In the development, eight steps were distinguished: (1) establishing a multidisciplinary steering group, (2) definition of the end users and scope and purpose of the PtDA, (3) assessment of the decisional needs of end users, (4) defining requirements for the PtDA, (5) determining the format and implementation strategy for the PtDA, (6) prototyping, (7) alpha testing, and (8) beta testing.…”

“…The format of the PtDA was determined in consultation with the steering group and was inspired by the 4 steps of SDM and the format of other existing PtDAs [10,[19][20][21]26]. The implementation strategy was determined in the earlier stages of development (before prototyping) to enable optimization of the design and content of the PtDA and to adapt it to the workflow.…”

“…In cocreation, using a step-wise mixed method approach, we developed a PtDA integrating information on patients' personalized risks for LRRs and SPs to support SDM for personalized surveillance after curative treatment for invasive breast cancer. Development took place according to the IPDAS development process in combination with a mixed methods research design based on the development process of previously developed PtDAs [19][20][21]. Relevant experts, including patients and HCPs, were involved in development through steering group participation, participation in needs assessment studies, cocreative prototyping, and alpha and beta testing.…”