The Silent Majority: A Mixed Methods Analysis on the Perspectives of Women Who Forgo Post Mastectomy Breast Reconstruction

Abstract

PURPOSE: Post mastectomy breast reconstruction (PMBR) is an important component of breast cancer care that is associated with improved psychosocial well-being and survival.1–3 The Women’s Heath and Cancer Rights Act of 1998 mandated insurance coverage for reconstruction; however, rates of PMBR remain stagnant at approximately 40%.4 There is a paucity of research on women who forgo reconstruction despite representing the majority of the post mastectomy patient population.5 This study addresses that gap by investigating barriers in the preoperative pathway faced by patients who forgo PMBR. METHODS: A mixed-methods study was performed using in-depth qualitative interviews and the BREAST-Q questionnaire. The study population consisted of women who received a referral to plastic surgery but choose to forgo PMBR. Women were stratified into 2 groups based on utilization of the referral to plastic surgery or lack thereof. Separate interview guides were developed for both groups, and interviews were conducted until data saturation was reached. Interviews were coded and analyzed using iterative methodologies (eg, open, axial, and selective coding) under the grounded-theory framework. The qualitative interview data and quantitative BREAST-Q data were analyzed using concurrent triangulation methodology. Reliability and validation checks included member-checking and inter-rater reliability using Cohen’s kappa statistic (mean kappa = 0.99). RESULTS: Interviews with 8 patients who forwent PMBR revealed: (1) lack of trust in both breast and plastic surgeons was salient; (2) reliance on self-developed support networks and resources; (3) association between lower post mastectomy BREAST-Q scores and decreased utilization of referral to plastic surgery; and (4) dissonance between numerical BREAST-Q scores for psychosocial well-being and reported satisfaction. CONCLUSIONS: These findings lay the conceptual groundwork acknowledging that nonlegislative and nonfinancial barriers, such as physician distrust and lack of resources and patient-tailored information, contributes to underutilization of PMBR in certain populations. Use of qualitative methodology uncovered deficits in the current pathway to reconstruction faced by the silent majority of women who forgo PMBR including lack of trust in physicians, resources, and counseling. These findings suggest unmet needs of patients considering PMBR which necessitates efforts to address these deficits and increase quality of life and satisfaction after mastectomy by empowering vulnerable patient groups. REFERENCES: 1. Ng SK, Hare RM, Kuang RJ, et al. Breast reconstruction post mastectomy: patient satisfaction and decision making. Ann Plast Surg. 2016;76:640–644. 2. Lee CN, Deal AM, Huh R, et al. Quality of patient decisions about breast reconstruction after mastectomy. JAMA Surg. 2017;152:741–748. 3. Sheehan J, Sherman KA, Lam T, et al. Association of information satisfaction, psychological distress and monitoring coping style with post-decision regret following breast reconstruction. Psychooncology. 2007;16:342–351. 4. American Cancer Society. What are the key statistics about breast cancer? Available at http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-key-statistics. 5. Alderman AK, Hawley ST, Janz NK, et al. Racial and ethnic disparities in the use of postmastectomy breast reconstruction: results from a population-based study. J Clin Oncol. 2009;27:5325–5330.