Patient participation in multidisciplinary tumor conferences in breast and gynecological cancer care: How patient-centered is the communication?

OBJECTIVE: Patients' participation is part of patient-centeredness, but it is so far unclear whether providers in multidisciplinary tumor conferences (MTCs) with patient participation communicate in a patient-centered way. Our aim is to explore (a) to what extent providers ask questions to breast and gynecological cancer patients during case discussion in MTCs, (b) how providers respond to patients' expressions of emotions during case discussions, and (c) which patient- and context-related characteristics and responses are associated with patients' trust in the treatment team after the case discussion. METHODS: This observational study included survey data and audio recordings of MTCs with patient participation at three breast and gynecological cancer centers. Providers' questions to patients and responses to patients' emotional expressions were coded using the Verona Coding Definitions of Emotional Sequences. The response can be explicitly or non-explicitly related to the emotion and space-reducing or space-providing. Multiple linear regression analysis was used to determine associations between providers' responses, patient- and context-related characteristics, and patients' trust in the treatment team after the case discussion. RESULTS: We analyzed 82 case discussions (77 breast, 5 breast and gynecological cancer patients). Providers asked a total of 646 questions, of which 86% were polar (yes/no). Providers gave 303 responses to a total of 230 emotional expressions by patients. Non-explicit responses were associated with more trust when they were space-providing, but with less trust when space-reducing. CONCLUSIONS: The frequency of providers' closed questions and space-reducing responses to emotions shows that patient-centered communication rarely takes place in MTCs with patient participation.

How shared is decision-making in multidisciplinary tumour conferences with patient participation? An observational study.

BACKGROUND: In some breast and gynaecologic cancer centres in Germany, patients participate in their own case discussion in multidisciplinary tumour conferences (MTCs), where treatment recommendations are discussed and finalized. However, the extent to which patients in MTCs are involved in decision-making on treatment recommendations remains largely unexplored. Hence, this study investigates how recommendations are communicated to patients and the extent to which the interactions with patients in MTCs are in line with shared decision-making (SDM). METHODS: In this observational study, we audio-recorded MTCs with patient participation in three breast and gynaecologic cancer centres in Germany. We qualitatively analysed the data with regard to content and linguistic aspects. RESULTS: We analysed 82 case discussions. Recommendations made during MTCs were regarding (i) treatment options, (ii) treatment initiation, (iii) next (treatment) steps and (iv) whether a treatment method should be initiated at all. The decision about recommendations depended in part on patients' preferences or further course/further outcomes. Although the purpose of MTCs is to provide recommendations, some recommendations were framed as the final decision. The majority of the decision-making conversation could be characterized as option talk (78%), during which patients were mostly proposed only one (treatment) option. CONCLUSIONS: This study establishes limited SDM in MTCs with patient participation. By indicating choices and thereby creating awareness of choices among patients, MTCs with patient participation could be used to foster SDM implementation. PATIENT OR PUBLIC CONTRIBUTION: Two representatives of a large self-help organization for patients with breast cancer assisted the research project, particularly, in discussing the results.

Is patient participation in multidisciplinary tumor conferences associated with their fear of progression?

PURPOSE: Previous studies found that some breast cancer patients in Germany are invited to participate in a multidisciplinary tumor conference (MTC) during the discussion of their own case. MTCs are regular meetings of a treatment team in which the diagnosis and treatment plan of cancer patients are discussed. Psychological consequences concerning the patients' participation in an MTC have not been examined yet. This study examines the association between patients' participation in MTC and patients' fear of progression (FoP). METHODS: This analysis is part of a larger project named "Patient participation in multidisciplinary tumor conferences in Breast Cancer Care" (PINTU) which is a multicenter observational mixed-methods study. The study was conducted in six breast and gynecological cancer centers in North Rhine-Westphalia, Germany. Data were collected from 2018 to 2020 by patient survey at three time points. Patients with (n = 81) and without (n = 120) MTC participation were compared. FoP was measured with a 12-item short form of the FoP Questionnaire (FoP-Q-SF) at all three measurement time points. Data analysis included descriptive statistics, a one-way repeated variance analysis (ANOVA), and a one-way repeated ANCOVA using the propensity score as a covariate. RESULTS: Data of n = 201 patients were included in the analysis. In general, FoP scores decreased in both groups from T0 to T2 (F = 36.539, p < 0.001, η2  = 0.155). Non-participating patients did not differ with regard to their FoP from patients who participated in an MTC before and after participation. The results of AN(C)OVA revealed no significant effects concerning the influence of patient participation in an MTC on FoP (F = 0.014, p = 0.907, η2 = <0.001 and (F = 0.013, p = 0.909, η2 = <0.001). CONCLUSION: Since the FoP is not influenced by participation, the findings do not support recommendations for or against patient participation in an MTC. Further research should focus on the question of which patient groups might benefit from participation in an MTC with regard to which outcome variables.

Patient participation in multidisciplinary tumor conferences: Providers' perceptions of patients' need satisfaction and emotional experiences.

OBJECTIVE: In some breast and gynecological cancer centers in Germany, patients participate in multidisciplinary tumor conferences (MTCs) during the discussion of their own case. The aim of this study was to explore providers' perceptions concerning patients' emotional experiences during participation in an MTC by comparing the perspectives of providers with and without experience with patient participation. METHODS: In this study, semi-structured interviews with n = 30 providers in n = 6 breast and gynecological cancer centers in North Rhine-Westphalia, Germany, were conducted. One half of the providers had no experience and the other half had experience with patient participation in MTCs. The interviews were audiotaped and transcribed, and content analysis was performed. RESULTS: The results of this study show a mixed picture of met, unmet and disappointed needs of patients and their emotional reactions, which mainly overlap between both provider groups. Our results show that both provider groups report positive and negative experiences or expectations. CONCLUSION: The mixed results regarding expected and perceived patient experiences from the providers' perspective suggest that patient participation in MTCs may not be exclusively of benefit. Further research on advantages and disadvantages for patients and on feasibility from the providers' perspective is necessary and will be conducted within the PINTU project.

Health literacy and patient participation in multidisciplinary tumor conferences in breast cancer care: a multilevel modeling approach.

BACKGROUND: Decisions made in multidisciplinary tumor conferences (MTC) that consider patient preferences result in better patient outcomes. Furthermore, it has been shown that in some breast cancer centers in Germany, patients participate in MTCs and that participation is associated with sociodemographic and breast cancer center-related factors. Health literacy (HL) has been shown to be predictive for individual health behavior and is an important prerequisite for patient participation in healthcare. However, so far nothing is known about the association between HL and MTC patient participation. To close this gap in research, we analyzed which patient characteristics affect participation in MTCs and whether participation varies between breast cancer centers. METHODS: In a prospective, multicenter cohort study, newly diagnosed breast cancer patients were surveyed directly after surgery (T1) as well as 10 weeks (T2) and 40 weeks (T3) after surgery. After descriptive analysis, t-tests were conducted, correlations for independent variables were run, and logistic multilevel regression analysis was applied to estimate the association between patient participation in MTCs at T1 and HL (HLS-EU-Q16 [1]), sociodemographic and disease-related characteristics (n = 863 patients) and the variation between breast cancer centers (n = 43 centers). RESULTS: Descriptive results show that 6.8% of breast cancer patients took part in a MTC. The logistic multilevel regression model revealed that patients with an inadequately HL are less likely to participate in MTCs (OR = 0.31, 95%-CI = 0.1-0.9, Pseudo-R2 = 0.06), and participation is dependent on the breast cancer center (ICC = 0.161). CONCLUSIONS: These findings are the first to show significant differences in HL and patient participation in MTCs in a large sample of breast cancer patients. In future research on patient participation in MTCs and HL, questions concerning the organization, communication and decision-making in MTCs with and without patient participation have to be addressed, and patient and provider perspectives must be equally considered. TRIAL REGISTRATION: Database Health Services Research, VfD_PIAT_12_001630 , registered prospectively on 01.03.2012.

Shared-Decision-Making Experiences in Breast Cancer Care with and without Patient Participation in Multidisciplinary Tumor Conferences: A Mixed-Methods-Study.

Purpose: This study aimed (1) to analyze patients' perceived shared decision-making (SDM) experiences over 4 weeks between patients participating or not in multidisciplinary tumor conferences (MTCs) and (2) to analyze the association of patients' active participation in and organizational variables of MTCs with patients' perceived SDM experience directly after MTC. Patients and Methods: From the N=317 patients, this observational study included patient surveys, observations, and audio transcripts from MTCs with (N=82) and without (N=145) patient participation in six breast and gynecologic cancer centers. We performed t tests for within- and between-group comparisons and linear regression with "patients' perceived SDM experiences in MTC" as the dependent variable. Results: Patients' perceived SDM experiences increased at 4 weeks after MTC (p<0.001) with lower perceived SDM experiences for participating versus nonparticipating patients (p<0.001). Linear regression showed that the organizational variable "round table seating arrangement" was significantly associated with higher perceived SDM experiences compared with a theater or U-shape arrangement (beta=-0.38, p=0.043; beta=-0.69, p=0.010) directly after MTC. Conclusion: Results provide first insights into patients' perceived SDM experiences in MTCs. SDM in MTCs is associated with organizational variables of MTCs. A round table seating arrangement in MTCs with patient participation seems important for patients' perceived SDM experiences. The relatively low perceived SDM experiences of participating patients directly after MTC indicates room for improvement, eg concerning patient-centered communication.

Questions and emotional expressions from patients and companions while participating in multidisciplinary tumor conferences in breast and gynecological cancer centers.

OBJECTIVE: To investigate (a) how many questions and negative emotions (cues/concerns) breast and/or gynecologic cancer patients and companions express during their case discussion in multidisciplinary tumor conferences (MTCs), (b) with which topics the emotions are linked, and (c) which patient- and context-related characteristics determine patients' communicative behavior. METHODS: This observational study included audio/video recordings of MTCs with patient participation in three breast and gynecological cancer centers. Using the Verona Coding Definitions of Emotional Sequences, patients' and companions' questions and negative emotions expressed were analyzed. Multiple regression analyses were used to determine associations between communicative behavior and patient- and context-related characteristics. RESULTS: We identified 607 questions and 230 cues/concerns expressed by patients/companions in 82 case discussions in MTCs. The number of questions was significantly associated with the hospital. In case discussions with patients who had need for psychological support and who were accompanied, more questions were asked by patients/companions. CONCLUSION: The results show that active patient participation does not depend only on patient characteristics, but also on the hospital setting. PRACTICE IMPLICATIONS: If cancer centers want to enable patient participation in MTCs, they must define the role of the patient before. Subsequently, conditions must be created to enable this role expectation.

Decision-Making in Multidisciplinary Tumor Boards in Breast Cancer Care - An Observational Study.

PURPOSE: Healthcare providers decide on recommendations for further treatment of patients with cancer in multidisciplinary tumor boards (MTBs). As such, communicative processes during MTBs are assumed to influence decision-making and, thereby, treatment planning. The aim of this exploratory study is to gain insights into decision-making during MTBs. METHODS: Case discussions from MTBs in breast cancer centers in North Rhine-Westphalia, Germany, were observed and audiotaped. The transcripts of the audio recordings were analyzed by procedures of conversation analysis. RESULTS: Based on 38 case discussions from 15 MTBs in four breast cancer centers, an action scheme for decision-making in MTBs in breast cancer care was developed. In addition, the conversational practices used by the participants during interactions were analyzed. CONCLUSION: Analysis indicated that conventions in MTBs were observed during individual phases of decision-making but not for the entire process. Although exchanging multidisciplinary knowledge is an essential aspect of MTBs, this exchange does not always seem to occur in practice. The extent to which recommendations are derived from consensus during MTBs remains unclear. Thus, the study suggests developing standards for communication during MTBs to optimize decision-making and, thus, the quality of recommendation.

Is patient participation in multidisciplinary tumour conferences associated with their information needs? A multicentre prospective observational study.

OBJECTIVES: To determine the association between participation of patients with breast cancer and patients with gynaecological cancer in their own multidisciplinary tumour conference (MTC) and their information needs with regard to their disease and treatment options. METHODS: This is a prospective observational study that took place at six breast cancer and gynaecological cancer centres in North Rhine-Westphalia, Germany. Patient inclusion criteria included a minimum age of 18 years and at least one diagnosis of breast cancer or gynaecological cancer. Three surveys were administered. T0 (shortly before MTC), T1 (directly after MTC) and T2 (4 weeks after MTC). Patient information needs were measured using two three-item subscales of the Cancer Patients Information Needs scale. Analysis of change was done by one-way repeated measures analysis of variance (ANOVA). To control for sampling bias, a further one-way repeated measures analysis of covariance (ANCOVA) included a propensity score as a covariate. RESULTS: Data from 81 patients in the participation group and 120 patients in the non-participation group were analysed. The patient groups did not differ in their levels of information needs at T0 or T2. From T0 to T2, information needs increased statistically significantly in both groups with regard to both disease-related information (η²=0.354) and treatment-related information (η²=0.250). The increase in both types of information needs lost its statistical significance when the propensity score was included as a covariate. Neither ANOVA nor ANCOVA revealed a statistically significant association between patients' participation in the MTC and their self-reported information needs. CONCLUSION AND CLINICAL IMPLICATIONS: As concerns patients' information needs, findings do not support a general recommendation for or against the participation of patients in their MTCs. Future research should focus on the different ways of patients' participation in their MTCs facilitated at different cancer centres. Further research should also aim to establish which patient and disease characteristics predispose patients to benefit from participating in their MTCs.

Opportunities and limitations of shared decision making in multidisciplinary tumor conferences with patient participation - A qualitative interview study with providers.

OBJECTIVE: The aim of this study was to examine opportunities and limitations of shared decision making in multidisciplinary tumor conferences with patient participation from the providers' perspective in breast and gynecological cancer centers. METHODS: Semi-structured guideline-based expert interviews were conducted with providers from breast and gynecological cancer centers with and without patient participation in multidisciplinary tumor conferences. Interviews were transcribed, anonymized and analyzed using qualitative content analysis. RESULTS: The providers (n = 30) reported that some process steps of shared decision making can be implemented in limited form and under certain conditions in multidisciplinary tumor conferences with patient participation. Above all, patients can potentially ask questions and contribute individual additional information and their preferences. CONCLUSION: This study contributes first insights into the implementation of shared decision making in multidisciplinary tumor conferences with patient participation. From the providers' perspective, the implementation of shared decision making seems difficult under the current circumstances. Further studies, using patient experiences, participative observations or interventional designs, are required. PRACTICE IMPLICATIONS: Despite the limited implementation of shared decision making in tumor conferences, patient participation can be advantageous as it can allow patients to ask questions and contribute individual additional information as well as their preferences.

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.

Patient Participation in Multidisciplinary Tumor Conferences from the Providers' Perspective: Is It Feasible in Routine Cancer Care?

OBJECTIVE: Recent studies from Germany show that a small amount of breast and gynecological cancer patients participate in multidisciplinary tumor conferences (MTCs) at some cancer centers. One reason for the variation by center might be the providers' attitudes about and experiences with MTC patient participation (MTCpp), which has not been analyzed before. Therefore, it is the aim of this study to analyze the providers' expected or experienced feasibility concerning MTCpp at breast and gynecological cancer centers in Germany. METHODS: This paper presents cross-sectional qualitative interview data from the PINTU study. From April to December 2018, n=30 health-care providers from n=6 breast and gynecological cancer centers in North-Rhine-Westphalia, Germany, were interviewed. One-half of the providers had no experience and the other half had experience with MTCpp. Inductive and deductive coding was performed in order to capture the feasibility aspects of participation. RESULTS: MTCpp seems not to be feasible in routine cancer care following providers' expected barriers and negative experiences. However, MTCpp seems to be feasible for selected cancer patients following providers' expected opportunities and positive experiences. Our results show that both provider groups report positive and negative experiences or expectations. CONCLUSION: The mixed findings regarding expected or experienced feasibility of MTCpp provide first insights into differences concerning MTCpp between organizations. Our results suggest that the providers' perceptions (expectations and experiences) influence the possibility for patients to participate in an MTC in a cancer center.

Patient participation in multidisciplinary tumour conferences in breast cancer care (PINTU): a mixed-methods study protocol.

INTRODUCTION: A central instrument of multidisciplinary care is the multidisciplinary tumour conference (MTC). In MTCs, diagnosis and treatment of cancer patients are discussed, and therapy recommendations are worked out. As we found previously, patients participate in MTCs in some breast cancer centres in the state of North Rhine-Westphalia, Germany. However, studies on risks and benefits of patient participation have not provided substantiated findings. Therefore, the study's objective is to analyse differences between MTCs with and without patient participation. METHODS AND ANALYSIS: This is an exploratory mixed-methods study. MTCs in six breast and gynaecological cancer centres in North Rhine-Westphalia, Germany, are examined. MTCs will be conducted with and without patient participation. First, interviews with providers concentrating on the feasibility of patient participation and quality of decision-making will be carried out, transcribed and analysed by means of content analysis. Second, videotaped or audiotaped participatory observations in MTCs will be executed. Video data or transcribed audio data from video and audio recordings will be coded using the established "Observational Assessment Rating Scale" for MTCs and analysed by comparing centres with and without patient participation. Third, all patients will fill out a questionnaire before and after MTC, including questions on psychosocial situation, decision-making and expectations before and experiences after MTC. The questionnaire data will be analysed by means of descriptive and multivariate statistics and pre-post-differences within and between groups. ETHICS AND DISSEMINATION: Consultation and a positive vote from the ethics committee of the Medical Faculty of the University of Cologne have been obtained. For all collected data, relevant data protection regulations will be adhered to. All personal identifiers from patients and providers will be pseudonymised, except video recordings. Dissemination strategies include a discussion with patients and providers in workshops about topics such as feasibility, risks and benefits of patient participation in MTCs. TRIAL REGISTRATION NUMBER: DRKS00012552.

How do breast cancer patients experience multidisciplinary tumor conferences? - A description from the patient perspective.

OBJECTIVES: Aim of this study was to investigate the experiences of breast cancer patients who participated in multidisciplinary tumor conferences (MTCs). STUDY DESIGN: Data from two consecutive years of an annual postal survey of patients with primary breast cancer were combined. Data was collected between February and July 2015 (response rate 72%) and 2016 (response rate 73%) from N = 8893 patients (ICD-10 C50) after hospital discharge from 86 breast cancer center hospitals in North Rhine-Westphalia, Germany. The study used a mixed-methods design. Standardized quantitative survey questions were analyzed descriptively and an open-ended question was analyzed using qualitative content analysis. RESULTS: Around 9% of the patients were invited to participate in a multidisciplinary tumor conference (MTC) and 49% of the invited patients reported actual participation in a MTC. Approximately 87% of those patients did not regret their participation in the MTC. The qualitative analysis from the open-ended question indicated that MTC participation was perceived by patients as being both supportive and informative (n = 109 expressions). However, some patients reported difficult experiences and emotional reactions during and after participation (n = 37 expressions). Altogether, the patients' perception was divided into positive and negative, cognitive and emotional experiences following participation in a MTC. CONCLUSION: The perception of the MTCs varies between the participating patients. Further research on advantages and disadvantages for patients and particularly on the feasibility from the provider's perspective is necessary.