Affiliation:
1. Department of Medicine Boston University Chobanian & Avedisian School of Medicine and Boston Medical Center Boston Massachusetts USA
2. Mongan Institute Department of Medicine Massachusetts General Hospital Boston Massachusetts USA
3. Clinical Translational Epidemiology Unit Massachusetts General Hospital Boston Massachusetts USA
Abstract
AbstractBackgroundBlack women experience significant disparities in breast cancer across the care continuum, including survivorship. Ensuring that Black women obtain high‐quality follow‐up care is critical but understudied. This study was aimed at understanding the experiences and needs of Black women during breast cancer survivorship.MethodsBlack patients diagnosed with invasive breast cancer within the past 5 years were invited to participate in a focus group and complete a survey. Focus groups examined the following: (1) the transition from active treatment to survivorship; (2) interactions with health care providers; (3) survivorship experiences, information needs, and preferences; and (4) existing educational materials. Results were thematically coded and analyzed for main themes. Surveys collected information on sociodemographics, health care experiences, quality of life, lifestyle, and education needs.ResultsThe study enrolled 53 participants, 43 of whom completed a survey and participated in one of 11 focus groups. The median age was 54 years, 44% had private insurance, 81% were English speaking, and 86% had completed their treatment more than a year before. Participants identified the importance of relationships with health care providers, gaps in survivorship care, experiences with cancer‐related symptoms, challenges with mental health, worry about recurrence, body image, cancer financial toxicity, and coping through religion and spirituality. Unmet needs were centered around preparation for long‐term symptoms, diet and physical activity, emotional support, and more explanations of information resources. Participants reported preferences for educational videos, personal stories, and culturally relevant content.ConclusionsSome Black breast cancer survivors may have specific challenges and preferences. Supportive interventions that address these concerns can be responsive and help to ameliorate disparities.
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