Adaptation of a breast reconstruction decision aid for Spanish-speaking, Latina survivors using rapid qualitative analysis and a multilingual community engagement model.

Abstract

Patient decision aids improve shared decision-making and patient-reported outcomes. BREASTChoice is an effective aid for breast reconstruction decisions after mastectomy. BREASTChoice was developed and tested in English and has limited external validity for Spanish-speaking Latina (SSL) breast cancer (BC) survivors, a population among the least likely to receive guideline-concordant BC treatments or make informed, preference-aligned BC surgery decisions. U.S. researchers report challenges communicating and implementing research with multilingual populations. Our objective was to rigorously adapt BREASTChoice for SSL BC survivors and their clinicians in the U.S. We applied the Cultural and Linguistic Adaptation Framework using multilingual, trauma-informed, rapid qualitative methods and a novel multilingual community engagement model. Iterative data collection and analysis included semi-structured interviews with 11 SSL BC survivors and 21 clinicians, followed by rapid qualitative analysis, tool translation and programming, and usability interviews with five additional SSL participants. Multilingual Community Review Board (MCRB) members from five Latin American countries/territories reviewed the translation. Adaptations were tracked using the Framework for Reporting Adaptations and Modifications-Enhanced (FRAME). Adaptations included adding content and clarifying information relevant to SSL survivors (e.g., insurance coverage, job impacts). We also redesigned the tool as a shareable website with printable features to improve accessibility and facilitate subsequent communication with clinical care providers. MCRB feedback targeted translation understandability across Spanish dialects and strengthened relevance for broader SSL communities. These qualitative and multilingual community-engaged methods yielded iterative enhancements to BREASTChoice's content, relevance, understandability, and strategies for dissemination to SSL BC survivors. This approach could facilitate research to improve patient-provider communication and treatment decision-making for the estimated 67.2 million U.S. residents who speak a language other than English.