Closing the Breast Cancer Loop: Barriers and Perceptions of Breast Reconstruction among Rural Women

Abstract

Background: Despite policies such as the Women's Health and Cancer Rights Act (WHCRA) and Breast Cancer Patient Education Act, rates for breast reconstruction vary and are especially low for some subpopulations of patients, especially rural women. In order to better understand patient perceptions, qualitative analysis using focus groups is an underutilized tool for obtaining patient perspectives regarding health-related issues and access to care. Our aim was to better understand patient perceptions using qualitative analysis. Methods: Three focus groups were held in rural counties within West Virginia in order to better understand patient perceptions, knowledge, and beliefs regarding breast health, breast cancer, access to breast reconstruction, and how to disseminate and educate this patient population regarding their right to accessing breast reconstruction. Results: Major themes analyses revealed perceived barriers to care related to lacking care coordination, lack of insurance coverage and other resources, as well as issues related to transportation. Participants consistently discussed avoiding breast screening care due fear and denial in addition to pain. Few patients were aware of their right to accessing breast reconstruction per the WHCRA, and many were concerned about follow-up burden, complications, and general fear related to breast reconstruction. Themes related to dissemination of information to promote the option of breast reconstruction included social media, patient counseling by their referring physician, and other means of intervention in clinics and other points in the care coordination chain. Conclusions: Rural women have important, unique viewpoints regarding access to and perceived barriers from obtaining breast reconstruction. Plastic surgeons must work diligently to educate, disseminate, and improve care coordination among this population in order to improve access to breast reconstruction among rural breast cancer patients.

Return of the Flap; The Empire State Mandate

“…9,23,24 To address these barriers, the 1998 WHCRA was introduced at the national level to mandate insurance coverage of postmastectomy breast reconstruction. 25 Despite the support of policy infrastructure, reconstruction rates remained low, which studies have attributed to the lack of patient education and accessible information. 6,8,9,23,25 These deficits motivated the passage of the 2010 BCPD Law in NYS, which encouraged the discussion of the reconstructive options to patients and mandated plastic surgery referral at the time of breast cancer diagnosis.…”

“…25 Despite the support of policy infrastructure, reconstruction rates remained low, which studies have attributed to the lack of patient education and accessible information. 6,8,9,23,25 These deficits motivated the passage of the 2010 BCPD Law in NYS, which encouraged the discussion of the reconstructive options to patients and mandated plastic surgery referral at the time of breast cancer diagnosis. 10,11 Although the overall rate of reconstruction has increased over time, few studies have focused on the effect of referral mandates on access to autologous reconstruction.…”

“…Further, access to postmastectomy reconstruction has been shown to be influenced by referral patterns of oncologists and general surgeons 9,23,24 . To address these barriers, the 1998 WHCRA was introduced at the national level to mandate insurance coverage of postmastectomy breast reconstruction 25 . Despite the support of policy infrastructure, reconstruction rates remained low, which studies have attributed to the lack of patient education and accessible information 6,8,9,23,25 .…”

Outcomes of patients in rural communities undergoing autologous breast reconstruction: A comparison of cost and patient demographics with implications for rural health policy

“…Despite legislative efforts, a study interviewed rural women and demonstrated that few were aware of their legal right to receive breast reconstruction (Mullens et al, 2020). Consequently, rural patients are half as likely (OR 0.51, CI: 0.28–0.93, p < .03) to undergo breast reconstruction as their urban counterparts (Tseng et al, 2010).…”

Perspectives of Women Who Forgo Post-mastectomy Breast Reconstruction: A Mixed Methods Analysis

“… 18 A recent study looking at barriers to reconstruction among rural women found that this population has unique information needs. 19 In this study, we attempt to fill the gap in literature by exploring perspectives of women who declined PMBR by using mixed methods: qualitative patient interviews and quantitative BREAST-Q. A comprehensive understanding of preoperative barriers to PMBR can be used to guide efforts that promote trust, provide support, empower vulnerable patient groups, and perhaps increase utilization of PMBR.…”