Effects of prognostic communication strategies on emotions, coping, and appreciation of consultations: An experimental study in advanced cancer.

OBJECTIVES: We aimed to investigate effects of prognostic communication strategies on emotions, coping, and appreciation of consultations in advanced cancer. METHODS: For this experimental study, we created 8 videos of a scripted oncological consultation, only varying in prognostic communication strategies. Disease-naive individuals (n = 1036) completed surveys before and after watching 1 video, while imagining being the depicted cancer patient. We investigated effects of the type of disclosure (prognostic disclosure vs. communication of unpredictability vs. non-disclosure) and content of disclosure (standard vs. standard and best-case vs. standard, best- and worst-case survival scenarios; numerical vs. word-based estimates) on emotions, coping, and appreciation of consultations. Moderating effects of individual characteristics were tested. RESULTS: Participants generally reported more satisfaction (p < .001) after prognostic disclosure versus communication of unpredictability and less uncertainty (p = .042), more satisfaction (p = .005), and more desirability (p = .016) regarding prognostic information after numerical versus word-based estimates. Effects of different survival scenarios were absent. Prognostic communication strategies lacked effects on emotions and coping. Significant moderators included prognostic information preference and uncertainty tolerance. SIGNIFICANCE OF RESULTS: In an experimental setting, prognostic disclosure does not cause more negative emotions than non-disclosure and numerical estimates are more strongly appreciated than words. Oncologists' worries about harming patients should not preclude disclosing (precise) prognostic information, yet sensitivity to individual preferences and characteristics remains pivotal.

Effects of Prognostic Communication Strategies on Prognostic Perceptions, Treatment Decisions and End-Of-Life Anticipation in Advanced Cancer: An Experimental Study among Analogue Patients.

CONTEXT: Evidence-based guidance for oncologists on how to communicate prognosis is scarce. OBJECTIVES: To investigate the effects of prognostic communication strategies (prognostic disclosure vs. communication of unpredictability vs. non-disclosure; standard vs. standard and best-case vs. standard, best- and worst-case survival scenarios; numerical vs. word-based estimates) on prognostic perceptions, treatment decision-making and end-of-life anticipation in advanced cancer. METHODS: This experimental study used eight videos of a scripted oncological consultation, varying only in prognostic communication strategies. Cancer-naive individuals, who imagined being the depicted patient, completed surveys before and after watching one video (n = 1036). RESULTS: Individuals generally perceived dying within 1 year as more likely after prognostic disclosure, compared to communication of unpredictability or non-disclosure (P < 0.001), and after numerical versus word-based estimates (P < 0.001). Individuals felt better informed about prognosis to decide about treatment after prognostic disclosure, compared to communication of unpredictability or non-disclosure (P < 0.001); after communication of unpredictability versus non-disclosure (P < 0.001); and after numerical versus word-based estimates (P = 0.017). Chemotherapy was more often favored after prognostic disclosure versus non-disclosure (P = 0.010), but less often after numerical versus word-based estimates (P < 0.001). Individuals felt more certain about the treatment decision after prognostic disclosure, compared to communication of unpredictability or non-disclosure (P < 0.001). Effects of different survival scenarios were absent. No effects on end-of-life anticipation were observed. Evidence for moderating individual characteristics was limited. CONCLUSION: If and how oncologists discuss prognosis can influence how individuals perceive prognosis, which treatment they prefer, and how they feel about treatment decisions. Communicating numerical estimates may stimulate prognostic understanding and informed treatment decision-making.

Through the Eyes of Patients: The Effect of Training General Practitioners and Nurses on Perceived Shared Decision-Making Support.

PURPOSE: To examine the effects of training general practitioners and nurses in shared decision-making (SDM) support as perceived by cancer patients and survivors. DESIGN: An innovative, experimental design was adopted that included analogue patients (APs), that is, people who have or have had cancer and who imagine themselves in the position of the actor-patient presented in a video. Each AP assessed a video-recorded simulated consultation of a health care professional (HCP) conducted before or after an SDM support training program. The primary outcome was the APs' perceived SDM support with 13 self-developed items reflecting the perceived patient benefit of SDM support as well as the perceived HCP support behavior. Secondary outcomes included an overall rating of SDM support, AP-reported extent of SDM (CollaboRATE), satisfaction with the communication (Patient Satisfaction Questionnaire), conversation appreciation and helpfulness, as well as decision-making satisfaction and confidence (visual analog scale, 0-100). In addition, patient and HCP characteristics associated with AP-perceived SDM support were examined. RESULTS: APs (n = 131) did not significantly differentiate trained from untrained HCPs in their perceptions of SDM support nor in secondary outcomes. Agreement between APs' perceptions was poor. The higher the perceived comparability of the consultation with APs' previous personal experiences, the higher their rating of SDM support. LIMITATIONS: We used a nonvalidated primary outcome and an innovative study design that should be tested in future work. CONCLUSIONS: Despite the limitations of the study design, the training seemed to not affect cancer patients' and survivors' perceived SDM support. IMPLICATIONS: The clinical relevance of the training on SDM support needs to be established. The variation in APs' assessments suggests patients differ in their perception of SDM support, stressing the importance of patient-tailored SDM support. HIGHLIGHTS: Cancer patients and survivors did not significantly differentiate trained from untrained HCPs when evaluating SDM support, and agreement between their perceptions was poor.The clinical relevance of training GPs and nurses in SDM support needs to be established.Patient-tailored SDM support may be recommended, given the variation in APs' assessments and their possible diverging perceptions of SDM support.This innovative study design (having patients watch and assess videos of simulated consultations made in the context of training evaluation) needs to be further developed.

Potential Adverse Outcomes of Shared Decision Making about Palliative Cancer Treatment: A Secondary Analysis of a Randomized Trial.

BACKGROUND: While shared decision making (SDM) is advocated for ethical reasons and beneficial outcomes, SDM might also negatively affect patients with incurable cancer. The current study explored whether SDM, and an oncologist training in SDM, are associated with adverse outcomes (i.e., patient anxiety, tension, helplessness/hopelessness, decisional uncertainty, and reduced fighting spirit). DESIGN: A secondary analysis of a randomized clinical trial investigating the effects of SDM interventions in the context of advanced cancer. The relations between observed SDM (OPTION12), specific SDM elements (4SDM), oncologist SDM training, and adverse outcomes were analyzed. We modeled adverse outcomes as a multivariate phenomenon, followed by univariate regressions if significant. RESULTS: In total, 194 patients consulted by 31 oncologists were included. In a multivariate analysis, observed SDM and adverse outcomes were significantly related. More specifically, more observed SDM in the consultation was related to patients reporting more tension (P = 0.002) and more decisional uncertainty (P = 0.004) at 1 wk after the consultation. The SDM element "informing about the options" was especially found to be related to adverse outcomes, specifically to more helplessness/hopelessness (P = 0.002) and more tension (P = 0.016) at 1 wk after the consultation. Whether the patient consulted an oncologist who had received SDM training or not was not significantly related to adverse outcomes. No relations with long-term adverse outcomes were found. CONCLUSIONS: It is important for oncologists to realize that for some patients, SDM may temporarily be associated with negative emotions. Further research is needed to untangle which, when, and how adverse outcomes might occur and whether and how burden may be minimized for patients. HIGHLIGHTS: Observed shared decision making was related to more tension and uncertainty postconsultation in advanced cancer patientsHowever, training oncologists in SDM did not affect adverse outcomes.Further research is needed to untangle which, when, and how adverse outcomes might occur and how burden may be minimized.

Prevalence and Predictors of Physician-Patient Discordance in Prognostic Perceptions in Advanced Cancer.

BACKGROUND: Discordance between physicians' and patients' prognostic perceptions in advanced cancer care threatens informed medical decision-making and end-of-life preparation, yet this phenomenon is poorly understood. We sought to: (1) describe the extent and direction of prognostic discordance, patients' prognostic information preferences in cases of prognostic discordance, and physicians' awareness of prognostic discordance; and (2) examine which patient, physician, and caregiver factors predict prognostic discordance. MATERIALS AND METHODS: Oncologists and advanced cancer patients (median survival ≤12 months; n = 515) from 7 Dutch hospitals completed structured surveys in a cross-sectional study. Prognostic discordance was operationalized by comparing physicians' and patients' perceptions of the likelihood of cure, 2-year mortality risk, and 1-year mortality risk. RESULTS: Prognostic discordance occurred in 20% (likelihood of cure), 24%, and 35% (2-year and 1-year mortality risk) of physician-patient dyads, most often involving patients with more optimistic perceptions than their physician. Among patients demonstrating prognostic discordance, the proportion who preferred not knowing prognosis varied from 7% (likelihood of cure) to 37% (1-year mortality risk), and 45% (2-year mortality risk). Agreement between physician-perceived and observed prognostic discordance or concordance was poor (kappa = 0.186). Prognostic discordance was associated with several patient factors (stronger fighting spirit, self-reported absence of prognostic discussions, an information source other than the healthcare provider), and greater physician-reported uncertainty about prognosis. CONCLUSION: Up to one-third of the patients perceive prognosis discordantly from their physician, among whom a substantial proportion prefers not knowing prognosis. Most physicians lack awareness of prognostic discordance, raising the need to explore patients' prognostic information preferences and perceptions, and to tailor prognostic communication.

A blended learning for general practitioners and nurses on skills to support shared decision-making with patients about palliative cancer treatment: A one-group pre-posttest study.

OBJECTIVE: To evaluate a newly developed blended learning programme for general practitioners (GPs) and nurses in supporting shared decision making (SDM) about palliative cancer treatment in a simulated setting. METHODS: In a pre-posttest study, healthcare professionals (HCPs) participated in the blended learning (i.e. e-learning and (online) training session). HCPs filled out surveys (T0 (baseline), T1 (after e-learning) and T2 (after full blended learning)) and engaged in simulated consultations at T0 and T2. The primary outcome was observed SDM support (Triple-S; DSAT-10 for validation). Secondary outcomes included satisfaction, knowledge about and attitude towards SDM support. Repeated measures General Linear Models were conducted. RESULTS: 33 HCPs (17 GPs and 16 nurses) participated. SDM support significantly improved after training (Triple-S; medium effect). Observers' overall rating of SDM support (medium effect) as well as HCPs' knowledge (large effect) and beliefs about their capabilities (medium effect) improved after training. There was no difference in decision support skills (DSAT-10), HCPs' other clinical behavioural intentions and satisfaction. HCPs evaluated the training positively. CONCLUSION: Blended learning for HCPs on supporting SDM in palliative cancer care improved their skills, knowledge and confidence in simulated consultations. PRACTICE IMPLICATIONS: These first findings are promising for evaluating interprofessional SDM in clinical practice.

Patient-Caregiver Dyads' Prognostic Information Preferences and Perceptions in Advanced Cancer.

CONTEXT: Prognostic information is considered important for advanced cancer patients and primary informal caregivers to prepare for the end of life. Little is known about discordance in patients' and caregivers' prognostic information preferences and prognostic perceptions, while such discordance complicates adaptive dyadic coping, clinical interactions and care plans. OBJECTIVES: To investigate the extent of patient-caregiver discordance in prognostic information preferences and perceptions, and the factors associated with discordant prognostic perceptions. METHODS: We conducted secondary analyses of a cross-sectional study (PROSPECT, 2019-2021). Advanced cancer patients (median overall survival ≤12 months) from seven Dutch hospitals and caregivers completed structured surveys (n = 412 dyads). RESULTS: Seven percent of patient-caregiver dyads had discordant information preferences regarding the likelihood of cure; 24%-25% had discordant information preferences regarding mortality risk (5/2/1 year). Seventeen percent of dyads had discordant perceptions of the likelihood of cure; 12%-25% had discordant perceptions of mortality risk (5/2/1 year). Dyads with discordant prognostic information preferences (P < 0.05) and dyads in which patients reported better physical functioning (P < 0.01) were significantly more likely to perceive the one-year mortality risk discordantly. CONCLUSION: Physicians should be sensitive to discordant prognostic information preferences and prognostic perceptions among patient-caregiver dyads in advanced cancer care.

Attitudes Toward Striving for Quality and Length of Life Among Patients With Advanced Cancer and a Poor Prognosis.

PURPOSE: When deliberating palliative cancer treatment, insight into patients' attitudes toward striving for quality of life (QL) and length of life (LL) may facilitate goal-concordant care. We investigated the (1) attitudes of patients with advanced cancer toward striving for QL and/or LL and whether these change over time, and (2) characteristics associated with these attitudes (over time). METHODS: We performed a secondary analysis of a randomized controlled trial on improving shared decision making (SDM), without differentiation between intervention arms. Patients (n = 173) with advanced cancer, a median life expectancy of < 12 months without anticancer treatment, and a median survival benefit of < 6 months from systemic therapy were included in seven Dutch hospitals. We used audio-recorded consultations and surveys at baseline (T0), shortly after the consultation (T2), at 3 and 6 months (T3 and T4). Primary outcomes were patients' attitudes toward striving for QL and LL (Quality Quantity Questionnaire; T2, T3, and T4). RESULTS: Overall, patients' attitudes toward striving for QL became less positive over 6 months (P < .01); attitudes toward striving for LL did not change on group level. Studying individual patients, 76% showed changes in their attitudes toward striving for QL and/or LL at some point during the study, which occurred in various directions. More helplessness/hopelessness (P < .001), less fighting spirit (P < .05), less state anxiety (P < .001), and more observed SDM (P < .05) related to more positive attitudes toward striving for QL. Lower education, less helplessness/hopelessness, more fighting spirit, and more state anxiety (P < .001) related to more positive attitudes toward striving for LL. CONCLUSION: Oncologists may explore patients' attitudes toward striving for QL and LL repeatedly and address patients' coping style and emotions during SDM to facilitate goal-concordant care throughout the last phase of life.

Characteristics of patients with advanced cancer preferring not to know prognosis: a multicenter survey study.

BACKGROUND: For some patients with advanced cancer not knowing prognosis is essential. Yet, in an era of informed decision-making, the potential protective function of unawareness is easily overlooked. We aimed to investigate 1) the proportion of advanced cancer patients preferring not to know prognosis; 2) the reasons underlying patients' prognostic information preference; 3) the characteristics associated with patients' prognostic information preference; and 4) the concordance between physicians' perceived and patients' actual prognostic information preference. METHODS: This is a cross-sectional study with structured surveys (PROSPECT). Medical and thoracic oncologists included patients (n = 524), from seven Dutch hospitals, with metastatic/inoperable cancer and an expected median overall survival of ≤ 12 months. For analysis, descriptive statistics and logistic regression models were used. RESULTS: Twenty-five to 31% of patients preferred not to know a general life expectancy estimate or the 5/2/1-year mortality risk. Compared to patients preferring to know prognosis, patients preferring unawareness more often reported optimism, avoidance and inability to comprehend information as reasons for wanting limited information; and less often reported expectations of others, anxiety, autonomy and a sense of control as reasons for wanting complete information. Females (p < .05), patients receiving a further line of systemic treatment (p < .01) and patients with strong fighting spirit (p < .001) were more likely to prefer not to know prognosis. Concordance between physicians' perceived and patients' actual prognostic information preference was poor (kappa = 0.07). CONCLUSIONS: We encourage physicians to explore patients' prognostic information preferences and the underlying reasons explicitly, enabling individually tailored communication. Future studies may investigate changes in patients' prognostic information preferences over time and examine the impact of prognostic disclosure on patients who prefer unawareness.

Addressing colon cancer patients' needs during follow-up consultations at the outpatient clinic: a multicenter qualitative observational study.

PURPOSE: To describe colon cancer patients' needs and how healthcare providers respond to these needs during routine follow-up consultations in hospital. METHODS: A multicenter qualitative observational study, consisting of follow-up consultations by surgeons and specialized oncology nurses. Consultations were analyzed according to Verona Coding Definitions of Emotional Sequences. Patients' questions, cues, and concerns were derived from the data and categorized into supportive care domains. Responses of healthcare providers were defined as providing or reducing space for disclosure. Patient satisfaction with care was measured with a short questionnaire. RESULTS: Consultations with 30 patients were observed. Questions typically centered around the health system and information domain (i.e., follow-up schedule and test results; 92%). Cues and concerns were mostly associated with the physical and daily living domain (i.e., experiencing symptoms and difficulties resuming daily routine; 43%), followed by health system and information (i.e., miscommunication or lack of clarity about follow-up; 28%), and psychological domain (i.e., fear of recurrence and complications; 28%). Problems in the sexuality domain hardly ever arose (0%). Healthcare providers provided space to talk about half of the cues and concerns (54%). Responses to cancer-related versus unrelated problems were similar. Overall, the patients were satisfied with the information and communication received. CONCLUSIONS: Colon cancer patients express various needs during consultations. Healthcare providers respond to different types of needs in a similar fashion. We encourage clinicians to discuss all supportive care domains, including sexuality, and provide space for further disclosure. General practitioners are trained to provide holistic care and could play a greater role.

Role of GPs in shared decision making with patients about palliative cancer treatment: a qualitative study in the Netherlands.

BACKGROUND: GPs are well placed to enhance shared decision making (SDM) about treatment for patients with advanced cancer. However, to date, little is known about GPs' views about their contribution to SDM. AIM: To explore GPs' perspectives on their role in SDM about palliative cancer treatment and the requirements they report to fulfil this role. DESIGN AND SETTING: Qualitative interview study among Dutch GPs. METHOD: GPs were sampled purposefully and conveniently. In-depth, semi-structured interviews were conducted, recorded, and transcribed verbatim. Transcripts were analysed by thematic analysis. RESULTS: Fifteen GPs took part in this study. Most of them reported practices that potentially support SDM: checking the quality of a decision, complementing SDM, and enabling SDM. Even though most of the GPs believed that decision making about systemic cancer treatment is primarily the oncologist's responsibility, they did recognise their added value in the SDM process because of their gatekeeper position, the additional opportunity they offer patients to discuss treatment decisions, and their knowledge and experience as primary healthcare providers at the end of life. Requirements for them to support the SDM process were described as: good collaboration with oncologists; sufficient information about the disease and its treatment; time to engage in conversations about treatment; a trusting relationship with patients; and patient-centred communication. CONCLUSION: GPs may support SDM by checking the quality of a decision and by complementing and enabling the SDM process to reach high-quality decisions. This conceptualisation of the GP's supporting role in SDM may help us to understand how SDM is carried out through interprofessional collaboration and provide tools for how to adopt a role in the interprofessional SDM process.

[A conversation with the general practitioner about cancer treatment decisions: a wise investment?] / Met de huisarts in gesprek over het oncologische behandelbesluit.

Although oncologists have expert knowledge about cancer and its treatment and make final treatment choices with patients, general practitioners are well positioned to enhance optimal involvement of patients and ensure decisions that match with patients' values and preferences. We comment on the findings of the trial of Perfors and colleagues (2020), in which they evaluated the effect of a Time Out consultation with the general practitioner between a cancer diagnosis and the treatment decision on perceived shared decision making. Although the trial did not go according to plan, the findings nevertheless offer interesting food for thought. We argue that involvement of the general practitioner may not be necessary before each decision and not for each patient with cancer, yet overall may prove valuable for patient-centered care on the short and the long term.

Informing Patients With Esophagogastric Cancer About Treatment Outcomes by Using a Web-Based Tool and Training: Development and Evaluation Study.

BACKGROUND: Due to the increasing use of shared decision-making, patients with esophagogastric cancer play an increasingly important role in the decision-making process. To be able to make well-informed decisions, patients need to be adequately informed about treatment options and their outcomes, namely survival, side effects or complications, and health-related quality of life. Web-based tools and training programs can aid physicians in this complex task. However, to date, none of these instruments are available for use in informing patients with esophagogastric cancer about treatment outcomes. OBJECTIVE: This study aims to develop and evaluate the feasibility of using a web-based prediction tool and supporting communication skills training to improve how physicians inform patients with esophagogastric cancer about treatment outcomes. By improving the provision of treatment outcome information, we aim to stimulate the use of information that is evidence-based, precise, and personalized to patient and tumor characteristics and is communicated in a way that is tailored to individual information needs. METHODS: We designed a web-based, physician-assisted prediction tool-Source-to be used during consultations by using an iterative, user-centered approach. The accompanying communication skills training was developed based on specific learning objectives, literature, and expert opinions. The Source tool was tested in several rounds-a face-to-face focus group with 6 patients and survivors, semistructured interviews with 5 patients, think-aloud sessions with 3 medical oncologists, and interviews with 6 field experts. In a final pilot study, the Source tool and training were tested as a combined intervention by 5 medical oncology fellows and 3 esophagogastric outpatients. RESULTS: The Source tool contains personalized prediction models and data from meta-analyses regarding survival, treatment side effects and complications, and health-related quality of life. The treatment outcomes were visualized in a patient-friendly manner by using pictographs and bar and line graphs. The communication skills training consisted of blended learning for clinicians comprising e-learning and 2 face-to-face sessions. Adjustments to improve both training and the Source tool were made according to feedback from all testing rounds. CONCLUSIONS: The Source tool and training could play an important role in informing patients with esophagogastric cancer about treatment outcomes in an evidence-based, precise, personalized, and tailored manner. The preliminary evaluation results are promising and provide valuable input for the further development and testing of both elements. However, the remaining uncertainty about treatment outcomes in patients and established habits in doctors, in addition to the varying trust in the prediction models, might influence the effectiveness of the tool and training in daily practice. We are currently conducting a multicenter clinical trial to investigate the impact that the combined tool and training have on the provision of information in the context of treatment decision-making.

The role of hospital nurses in shared decision-making about life-prolonging treatment: A qualitative interview study.

AIMS: To examine hospital nurses' perception of their actual and potential contribution to shared decision-making about life-prolonging treatment and their perception of the pre-conditions for such a contribution. DESIGN: A qualitative interview study. METHODS: Semi-structured face-to-face interviews were conducted with 18 hospital nurses who were involved in care for patients with life-threatening illnesses. Data were collected from October 2018-January 2019. The interviews were recorded, transcribed verbatim and analysed using thematic analysis by two researchers. RESULTS: Nurses experienced varying degrees of influence on decision-making about life-prolonging treatment. Besides, we identified different points of contact in the treatment trajectory at which nurses could be involved in treatment decision-making. Nurses' descriptions of behaviours that potentially contribute to shared decision-making were classified into three roles as follows: checking the quality of a decision, complementing shared decision-making and facilitating shared decision-making. Pre-conditions for fulfilling the roles identified in this study were: (a) the transfer of information among nurses and between nurses and other healthcare professionals; (b) a culture where there is a positive attitude to nurses' involvement in decision-making; (c) a good relationship with physicians; (d) knowledge and skills; (e) sufficient time; and (f) a good relationship with patients. CONCLUSION: Nurses described behaviour that reflected a supporting role in shared decision-making about patients' life-prolonging treatment, although not all nurses experienced this involvement as such. Nurses can enhance the shared decision-making process by checking the decision quality and by complementing and facilitating shared decision-making. IMPACT: Nurses are increasingly considered instrumental in the shared decision-making process. To facilitate their contribution, future research should focus on the possible impact of nurses' involvement in treatment decision-making and on evidence-based training to raise awareness and offer guidance for nurses on how to adopt this role.

The Effect of Prognostic Communication on Patient Outcomes in Palliative Cancer Care: a Systematic Review.

BACKGROUND: While prognostic information is considered important for treatment decision-making, physicians struggle to communicate prognosis to advanced cancer patients. This systematic review aimed to offer up-to-date, evidence-based guidance on prognostic communication in palliative oncology. METHODS: PubMed and PsycInfo were searched until September 2019 for literature on the association between prognostic disclosure (strategies) and patient outcomes in palliative cancer care, and its moderators. Methodological quality was reported. RESULTS: Eighteen studies were included. Concerning prognostic disclosure, results revealed a positive association with patients' prognostic awareness. Findings showed no or positive associations between prognostic disclosure and the physician-patient relationship or the discussion of care preferences. Evidence for an association with the documentation of care preferences or physical outcomes was lacking. Findings on the emotional consequences of prognostic disclosure were multifaceted. Concerning disclosure strategies, affective communication seemingly reduced patients' physiological arousal and improved perceived physician's support. Affective and explicit communication showed no or beneficial effects on patients' psychological well-being and satisfaction. Communicating multiple survival scenarios improved prognostic understanding. Physicians displaying expertise, positivity and collaboration fostered hope. Evidence on demographic, clinical and personality factors moderating the effect of prognostic communication was weak. CONCLUSION: If preferred by patients, physicians could disclose prognosis using sensible strategies. The combination of explicit and affective communication, multiple survival scenarios and expert, positive, collaborative behaviour likely benefits most patients. Still, more evidence is needed, and tailoring communication to individual patients is warranted. IMPLICATIONS: Future research should examine the effect of prognostic communication on psychological well-being over time and treatment decision-making, and focus on individualising care.

Effect of a Skills Training for Oncologists and a Patient Communication Aid on Shared Decision Making About Palliative Systemic Treatment: A Randomized Clinical Trial.

BACKGROUND: Palliative systematic treatment offers uncertain and often limited benefits, and the burden can be high. Hence, treatment decisions require shared decision making (SDM). This trial examined the independent and combined effect of an oncologist training and a patient communication aid on SDM. METHODS: In this multicenter randomized controlled trial with four parallel arms (2016-2018), oncologists (n = 31) were randomized to receive SDM communication skills training or not. The training consisted of a reader, two group sessions, a booster session, and a consultation room tool (10 hours). Patients (n = 194) with advanced cancer were randomized to receive a patient communication aid or not. The aid consisted of education on SDM, a question prompt list, and a value clarification exercise. The primary outcome was observed SDM as rated by blinded observers from audio-recorded consultations. Secondary outcomes included patient-reported SDM, patient and oncologist satisfaction, patients' decisional conflict, patient quality of life 3 months after consultation, consultation duration, and the decision made. RESULTS: The oncologist training had a large positive effect on observed SDM (Cohen's d = 1.12) and on patient-reported SDM (d = 0.73). The patient communication aid did not improve SDM. The combination of interventions did not add to the effect of training oncologists only. The interventions affected neither patient nor oncologist satisfaction with the consultation nor patients' decisional conflict, quality of life, consultation duration, or the decision made. CONCLUSION: Training medical oncologists in SDM about palliative systemic treatment improves both observed and patient-reported SDM. A patient communication aid does not. The incorporation of skills training in (continuing) educational programs for medical oncologists is likely to stimulate the widely advocated uptake of shared decision making in clinical practice. TRIAL REGISTRATION: Netherlands Trial Registry NTR 5489. IMPLICATIONS FOR PRACTICE: Treatment for advanced cancer offers uncertain and often small benefits, and the burden can be high. Hence, treatment decisions require shared decision making (SDM). SDM is increasingly advocated for ethical reasons and for its beneficial effect on patient outcomes. Few initiatives to stimulate SDM are evaluated in robust designs. This randomized controlled trial shows that training medical oncologists improves both observed and patient-reported SDM in clinical encounters (n = 194). A preconsultation communication aid for patients did not add to the effect of training oncologists. SDM training effectively changes oncologists' practice and should be implemented in (continuing) educational programs.

Patients' and Clinicians' Perceptions of Clinician-Expressed Empathy in Advanced Cancer Consultations and Associations with Patient Outcomes.

Background: Empathy is a cornerstone of effective communication. However, clinicians' and patients' perceptions of clinician-expressed empathy might differ. The independent perceptions of patients and clinicians on clinician-expressed empathy in advanced cancer consultations and the associations of these perceptions with patient outcomes are unknown. Objective: We assessed (1) patients' and clinicians' independent perceptions of clinician-(self-)expressed empathy in advanced cancer consultations and (2) the associations between these perceptions and affective patient outcomes. Methods: This observational study included data from 41 consultations in the advanced breast cancer setting. Postconsultation, patients' and clinicians' perceptions of clinician-expressed empathy were assessed, as well as patients' (1) pre-post anxiety, (2) post-anxiety, (3) emotional well-being, and (4) satisfaction. Multilevel regression analyses were run to draw conclusions. Results: Patients perceived higher levels of empathy than clinicians, without a significant relationship between the two (mean [M] = 85.47, standard deviation [SD] = 14.00 vs. M = 61.88, SD = 15.30, 0-100 scale; ß = 0.14, p < 0.138, 95% confidence interval [CI] = -0.04 to 0.32). Higher patient-perceived empathy was associated with decreased anxiety [(1) ß = -0.67, p = 0.039, 95% CI = -1.30 to -0.03; (2) ß = -0.15, p = 0.042, 95% CI = -0.30 to -0.01], higher satisfaction (ß = 0.05, p < 0.001, 95% CI = 0.03 to 0.08), and lower emotional distress (ß = -0.32, p < 0.001, 95% CI = -0.48 to -0.16). There were no associations with clinicians' perceptions [(1) ß = -0.34, p = 0.307, 95% CI = -1.00 to 0.31; (2) ß = -0.02, p = 0.824, 95% CI = -0.17 to 0.14; (3) ß < 0.01, p = 0.918, 95% CI = -0.03 to 0.02; (4) ß = 0.08, p = 0.335, 95% CI = -0.08 to 0.25]. Conclusions: Patients' and clinicians' empathy perceptions differed. In improving patient outcomes, the focus should be on patients' perceptions of clinician-expressed empathy. Future research could focus on ways to elicit patients' perceptions of empathy with the higher aim of improving patient outcomes.

Do Shared Decision-Making Measures Reflect Key Elements of Shared Decision Making? A Content Review of Coding Schemes.

Background. There is a growing need for valid shared decision-making (SDM) measures. We aimed to determine whether the items of extant SDM observer-based coding schemes assess the 4 key elements of SDM. Methods. Items of SDM coding schemes were extracted and categorized. Except for the 4 key elements of SDM (fostering choice awareness, informing about options, discussing patient preferences, and making a decision), (sub)categories were created inductively. Two researchers categorized items independently and in duplicate. Results. Five of 12 coding schemes assessed all 4 SDM elements. Seven schemes did not measure "fostering choice awareness," and 3 did not measure "discussing patient preferences." Seventy of 194 items (36%) could not be classified into one of the key SDM elements. Items assessing key SDM elements most often assessed "informing about options" (n = 57/124, 46%). Conclusion. Extant SDM coding schemes often do not assess all key SDM elements and have a strong focus on information provision while other crucial elements of SDM are underrepresented. Caution is therefore needed in reporting and interpreting the resulting SDM scores.

Patient coaching in specialist consultations. Which patients are interested in a coach and what communication barriers do they perceive?

OBJECTIVE: To characterize patients interested in support by a patient coach to guide them in medical specialist consultations. METHODS: We compared 76 patients interested in a patient coach with 381 patients without such an interest, using a representative panel of patients with a chronic disease in the Netherlands. Independent variables were demographic factors, socio-economic status, perceived efficacy in patient-provider interaction, communication barriers, health literacy, (duration and type of) disease(s) and activation level. RESULTS: In univariate analyses, patients who are interested in a coach were significantly older, had lower health literacy skills and less self-efficacy and, overall, experienced more communication barriers (>4), than patients without such interest (1-2 barriers). Multivariate analyses indicated three communications barriers as determinants of patient interest in a coach: feeling tense, uncertainty about own understanding, and believing that a certain topic is not part of a healthcare providers' task. CONCLUSION: Patients interested in a coach perceive specific barriers in communicating with their medical specialist. In addition, patients who are > = 65 years, have lower health literacy and low self-efficacy may have interest in a coach. PRACTICE IMPLICATIONS: Characterizing patients interested in a patient coach facilitates identification of those who could benefit from such a coach in clinical practice.