Patient participation in multidisciplinary tumor conferences: How is it implemented? What is the patients' role? What are patients' experiences?

BACKGROUND: Prior research has shown that around 5%-7% of patients in breast cancer centers in Germany participate in the discussion of their own case within a multidisciplinary tumor conference (MTC). The PINTU study is one of the first to research this practice. The objective is to describe (a) how patient participation in MTCs is implemented, (b) what is the role of patients, and (c) how patients experience MTCs. METHODS: MTCs in six breast and gynecological cancer centers in North Rhine-Westphalia, Germany, with and without patient participation, are studied prospectively by (non)participatory, structured observation. Breast and gynecological cancer patients completed surveys before, directly after, and 4 weeks after MTC participation. Data are analyzed descriptively. RESULTS: Case discussions of a sample of n = 317 patients (n = 95 with MTC participation and n = 222 without) were observed. Survey data were obtained from n = 242 patients (n = 87 and n = 155). Observational data showed heterogeneity in the ways MTC participation was practiced. Among participating patients, 89% had the opportunity to express their opinion and 61% were involved in decision-making. Whereas most patients reported positive experiences and would recommend participation, some had negative experiences and regretted participating. CONCLUSIONS: Due to a lack of recommendations, hospitals implement patient participation in MTCs in many different ways. So far, it is unknown which setting and procedures of MTC participation are beneficial for patients. However, existing evidence on communication in cancer care together with this exploratory study's findings can build the basis for developing recommendations for hospitals that invite their patients to MTCs. CLINICAL TRIAL REGISTRATION NUMBER: German Clinical Trials Register Nr. DRKS00012552.

Fluctuating mastectomy rates across time and geography.

In 2009, 2 single-institution studies from the United States reported increasing mastectomy rates during the last decade. We have recently reported unilateral mastectomy trends from a European database and demonstrated a significant trend of decreasing mastectomy rates from 38.1 % in 2005 to 13.1 % in 2010. A recent study from the SEER registry in the United States confirmed a previously reported decrease in mastectomy rates from 40.1 % in year 2000 to 35.6 % in 2005, but showed a statistically significant increase in mastectomy rates up to 38.4 % in 2008. This report provides evidence that mastectomy trends may be in opposite directions in different geographical areas. The sharpest increase in mastectomy rates across all ages in the recent SEER study occurs right after year 2005, which interestingly corresponds with the time of publication of the meta-analysis by the EBCTCG that highlighted the importance of local control in breast cancer. The coincident timing raises the question of whether this evidence may have indirectly triggered an increase in mastectomy rates in the United States that would partially explain the observed trend, and more importantly, of whether an increase would be justified on this basis. Multiple factors influence the proportion between mastectomy and breast conservation, so it may be unreasonable to think of an optimal cutoff. There is not necessarily a right or wrong direction for mastectomy trends, but aiming to determine explanations for these differences may help provide a clearer insight of the decision-making process involved in the surgical management of breast cancer.

Mastectomy trends for early-stage breast cancer: a report from the EUSOMA multi-institutional European database.

INTRODUCTION: Recent single-institution reports have shown increased mastectomy rates during the last decade. Further studies aiming to determine if these reports could be reflecting a national trend in the United States of America (US) have shown conflicting results. We report these trends from a multi-institutional European database. PATIENTS AND METHODS: Our source of data was the eusomaDB, a central data warehouse of prospectively collected information of the European Society of Breast Cancer Specialists (EUSOMA). We identified patients with newly diagnosed unilateral early-stage breast cancer (stages 0, I or II) to examine rates and trends in surgical treatment. RESULTS: A total of 15,369 early-stage breast cancer cases underwent surgery in 13 Breast Units from 2003 to 2010. Breast conservation was successful in 11,263 cases (73.3%). Adjusted trend by year showed a statistically significant decrease in mastectomy rates from 2005 to 2010 (p = 0.003) with a progressive reduction of 4.24% per year. A multivariate model showed a statistically significant association of the following factors with mastectomy: age < 40 or ≥ 70 years, pTis, pT1mi, positive axillary nodes, lobular histology, tumour grade II and III, negative progesterone receptors and multiple lesions. CONCLUSION: Our study demonstrates that a high proportion of patients with newly diagnosed unilateral early-stage breast cancer from the eusomaDB underwent breast-conserving surgery. It also shows a significant trend of decreasing mastectomy rates from 2005 to 2010. Moreover, our study suggests mastectomy rates in the population from the eusomaDB are lower than those reported in the US.