Patient Perspectives of Current Breast Education Resources: An Interview-Based Study
Erica B. Lee, MS1, Norah Oles, BS1, Pranjal Agrawal, BS1, Chao Long, MD1, Alexander Karius, BS1, Tristan Wesson, BS1, Matthew Generoso, BS1, Justin M. Sacks, MD, MBA2, Carisa M. Cooney, MPH1, Kristen Broderick, MD1
1Johns Hopkins University School of Medicine, Baltimore, MD; 2Washington University School of Medicine, St. Louis, MO
BACKGROUND: Despite efforts to provide comprehensive patient counseling, many women experience dissatisfaction with their body image post-breast reconstruction. Although previous studies have sought to optimize the text-content of patient education resources to best fit patient needs, it has yet to be investigated how patient education images may prepare women for the appearance of their reconstructed breast(s) and improve their body image. Consequently, this qualitative study explored women’s expectations of their reconstructed breast(s) and characterized the images they would have liked to have seen preoperatively.
METHODS: Individual, semi-structured interviews were conducted with patients who received breast reconstruction at a single-center academic institution. Participants were recruited using stratified purposeful sampling on age, racial and ethnic background, and reconstructive type. Participants were asked ten open-ended questions and were presented with two sample educational illustrations. Interviews were audio-recorded, transcribed verbatim, and analyzed thematically. Sampling, data collection, and analysis were undertaken concurrently and iteratively until data saturation was achieved.
RESULTS: Interviewees (n=18, average age 49+9 years, BMI 30+7 kg/m2) were 22+13 months post-reconstruction on average, had predominantly bilateral (67%) implant-based (77%) reconstruction, and identified as White (56%), (33% African American, 11% Asian). All participants described some degree of dissatisfaction with their body image within or after their reconstructive process. Five recurring themes were: (A) Inability to identify with their reconstructed breasts, (B) Paucity of images, (C) Abnormal tissue expander shape, (D) Loss of sexuality, and (E) Inability to fit in clothes. Although the ability to see relatable images improved body image during the reconstructive process, the majority were unable to find images of women who looked like them in size, color, or age. Women of racial and ethnic minorities expressed a lack of representation and desired to see how scars may form differently on their skin. Overall, participants were dissatisfied by the visual content of current educational resources and wished they had seen: (A) Depiction of reconstructive stages and potential revisions; (B) Representation of all body types, colors, and ages; (C) Appearance of scars on breast and donor sites; (D) Depiction of the immediate post-surgery period. Discussion: Breast reconstruction is a highly individualized journey requiring establishment of realistic expectations. Our findings point out that patients want to see images with relatable body types, skin colors, and scars as a component of their pre-operative education in order to better understand their reconstructive journeys and participate in shared decision-making surrounding their course of care.
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