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Dr. Sepucha receives salary and research support from the not-for-profit Informed Medical Decision Foundation. Dr. Levin receives salary support as Research Director for the Informed Medical Decision Foundation, a not-for-profit (501(c)3) private foundation (http://www.informedmedicaldecisions.org). The Foundation develops content for patient education programs. The Foundation has an arrangement with a for-profit company, Health Dialog, to co-produce these programs. The programs are used as part of the decision support and disease management services Health Dialog provides to consumers through health care organizations and employers.
All authors contributed substantially to one or more of the studies including (1) the conception and design of patient study (KRS, JB, CC, BM, AP, CL) and provider study (KRS, JB, BM, AP), acquisition of data (KRS, JB, BM, AP), or analysis and interpretation of data (KRS, JB, YC, BM, AP, CL) (2) drafting the article or revising it critically for important intellectual content (all authors) (3) final approval of the version to be submitted (all authors). The corresponding author, KRS (firstname.lastname@example.org), is responsible for the integrity of the work as a whole.
The purpose of this paper is to examine the acceptability, feasibility, reliability and validity of a new decision quality instrument that assesses the extent to which patients are informed and receive treatments that match their goals.
Cross-sectional mail survey of recent breast cancer survivors, providers and healthy controls and a retest survey of survivors. The decision quality instrument includes knowledge questions and a set of goals, and results in two scores: a breast cancer surgery knowledge score and a concordance score, which reflects the percentage of patients who received treatments that match their goals. Hypotheses related to acceptability, feasibility, discriminant validity, content validity, predictive validity and retest reliability of the survey instrument were examined.
We had responses from 440 eligible patients, 88 providers and 35 healthy controls. The decision quality instrument was feasible to implement in this study, with low missing data. The knowledge score had good retest reliability (intraclass correlation coefficient = 0.70) and discriminated between providers and patients (mean difference 35%, p < 0.001). The majority of providers felt that the knowledge items covered content that was essential for the decision. Five of the 6 treatment goals met targets for content validity. The five goals had moderate to strong retest reliability (0.64 to 0.87). The concordance score was 89%, indicating that a majority had treatments concordant with that predicted by their goals. Patients who had concordant treatment had similar levels of confidence and regret as those who did not.
The decision quality instrument met the criteria of feasibility, reliability, discriminant and content validity in this sample. Additional research to examine performance of the instrument in prospective studies and more diverse populations is needed.