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MDM Policy Pract. 2018 Nov 25;3(2):2381468318811839. doi: 10.1177/2381468318811839. eCollection 2018 Jul-Dec.

Adapting the Breast Cancer Surgery Decision Quality Instrument for Lower Socioeconomic Status: Improving Readability, Acceptability, and Relevance.

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The Dartmouth Institute for Health Policy & Clinical Practice, Dartmouth College, Lebanon, New Hampshire.
Division of General Internal Medicine, Massachusetts General Hospital, Boston, Massachusetts.
Department of Surgery, Division of Public Health Sciences, Washington University School of Medicine, St. Louis, Missouri.
Laura and Isaac Perlmutter Cancer Center, New York University School of Medicine, New York, New York.
Dartmouth-Hitchcock Medical Center, Lebanon, New Hampshire.
Department of Health Services Research, The University of Texas MD Anderson Cancer Center, Houston, Texas.
University of Utah, Salt Lake City, Utah.
Massachusetts General Hospital's Chelsea HealthCare Center, Chelsea, Massachusetts.


Introduction. Breast cancer is the second most common malignancy in women. The Decision Quality Instrument (DQI) measures the extent to which patients are informed and involved in breast surgery decisions and receive treatment that aligns with their preferences. There are limited data on the performance of the DQI in women of lower socioeconomic status (SES). Our aims were to 1) examine (and if necessary adapt) the readability, usability, and acceptability of the DQI and 2) explore whether it captures factors important to breast cancer surgery decisions among women of lower SES (relevance). Methods. We conducted semistructured cognitive interviews with women of lower SES (based on insurance status, income, and education) who had completed early-stage breast cancer treatments at three cancer centers. We used a two-step thematic analysis with dual independent coding. The study team (including Patient Partners and a Community Advisory Board) reviewed and refined suggested changes. The revised DQI was presented in two focus groups of breast cancer survivors. Results. We conducted 39 interviews. Participants found most parts of the DQI to be helpful and easy to understand. We made the following suggested changes: 1) added a glossary of key terms, 2) added two answer choices and an open text question in the goals and concerns subscale, 3) reworded the treatment intention question, and 4) revised the knowledge subscale instructions since several women disliked the wording and were unsure of what was expected. Discussion. The readability, usability, acceptability, and relevance of a measure that was primarily developed and validated in women of higher SES required adaptation for optimal use by women of lower SES. Further research will test these adaptations in lower SES populations.


acceptability; breast cancer surgery; decision making; decision quality; lower socioeconomic status; readability

Conflict of interest statement

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: GE and M-AD have developed the Option Grid patient decision aids, which are licensed to EBSCO Health. They receive consulting income from EBSCO Health and may receive royalties in the future. M-AD is a consultant for ACCESS Community Health Network. KS receives salary support as a member of the scientific advisory board for Healthwise, a not-for-profit foundation that develops and distributes patient education and decision support materials. MCP received a speaker fee from Merck & Co. and as a research contract from Merck, both unrelated to this study or manuscript. The other authors have no conflicts of interest to disclose.

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