Preferences and actual chemotherapy decision-making in the greater plains collaborative breast cancer study.

INTRODUCTION: There is renewed interest in identifying breast cancer patients' participation in decision-making about adjuvant chemotherapy. There is a gap in the literature regarding the impact of these decisions on quality of life (QOL) and quality of care (QOC). Our aims were to determine similarities and differences in how patients diagnosed with breast cancer preferred to make decisions with providers about cancer treatment, to examine the patient's recall of her role when the decision was made about chemotherapy and to determine how preferred and actual roles, as well as congruence between them, relate to QOL and perceived QOC. MATERIAL AND METHODS: Greater Plains Collaborative clinical data research network of PCORnet conducted the 'Share Thoughts on Breast Cancer' survey among women 12-18 months post-diagnosis at eight sites in seven Midwestern United States. Patients recalled their preferred and actual treatment decision-making roles and three new shared decision-making (SDM) variables were created. Patients completed QOL and QOC measurements. Correlations and t-tests were used. RESULTS: Of 1235 returned surveys, 873 (full sample) and 329 (subsample who received chemotherapy) were used. About one-half of women in both the full (50.7%) and subsample (49.8%,) preferred SDM with providers about treatment decisions, but only 41.2% (full) and 42.6% (subsample) reported experiencing SDM. Significant differences were found between preferred versus actual roles in the full (p < .001) and subsample (p < .004). In the full sample, there were no relationships between five decision-making variables with QOL, but there was an association with QOC. The subsample's decision-making variables related to several QOL scales and QOC items, with a more patient-centered decision than originally preferred related to higher physical and social/family well-being, overall QOL and QOC. CONCLUSIONS: Patients benefit from providers' efforts to identify patient preferences, encourage an active role in SDM, and tailor decision making to their desired choice.