Quality of life after immune suppressive therapy in aplastic anemia.

Acquired aplastic anemia (AA) is a rare form of immune-mediated bone marrow failure, which can result in life-threatening infections or bleeding if left untreated. Treatment consists of either immune suppressive therapy (IST) or allogeneic stem cell transplantation (alloHSCT). While considerable research has been published regarding survival, response rate and toxicity of both treatments, knowledge on the impact on quality of life (QoL) is scarce. We used the recently developed AA-specific QoL questionnaire (QLQ-AA/PNH-54) to evaluate QoL in a single center cohort of AA patients who were successfully treated with IST. The 54 questions represent 12 different QoL domains. Results were analyzed for all patients and grouped based on hematologic response (complete response (CR) or partial response (PR)). Thirty-six successfully treated adult patients (15 in CR, 21 in PR) completed the questionnaire (median age 54 years, range 21-71; median time since last IST 5 years, range 0-41). Fatigue was experienced by 83% of patients. Even though total QoL scores did not significantly differ between patients with PR and CR (105 vs 92, p-value 0,17) there appeared to be a trend towards higher scores in patients with PR, especially in domains concerning psychological wellbeing. This trend was most clear in the domains fear of progression (2,12 in PR patients vs 1,73 in CR patients; p-value 0,08) and role functioning (2,22 vs 1,88; p-value 0,07). In conclusion, patients with AA continue to experience psychological and physical effects despite successful IST.

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.

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.

Open communication between patients and relatives about illness & death in advanced cancer-results of the eQuiPe Study.

OBJECTIVE: To assess the degree of openness of communication about illness and death between patients with advanced cancer and their relatives during the last three months of the patient's life, and its association with relatives' characteristics and bereavement distress. METHODS: We used data from bereaved relatives of patients with advanced cancer from the prospective, longitudinal, multicenter, observational eQuipe study. Univariate and multivariable linear regression analyses were used to assess the association between the degree of openness of communication (measured using the validated Caregivers' Communication with patients about Illness and Death scale), the a priori defined characteristics of the relatives, and the degree of bereavement distress (measured using the Impact of Event Scale). RESULTS: A total of 160 bereaved relatives were included in the analysis. The average degree of open communication about illness and death between patients with advanced cancer and their relatives was 3.86 on a scale of 1 to 5 (SE=0.08). A higher degree of open communication was associated with a lower degree of bereavement distress (p=0.003). No associations were found between the degree of open communication and the relatives' age (p=0.745), gender (p=0.196), level of education (p>0.773), (religious) worldview (p=0.435), type of relationship with the patient (p>0.548), or level of emotional functioning before the patient's death (p=0.075). CONCLUSIONS: Open communication about illness and death between patients and relatives seems to be important, as it is associated with a lower degree of bereavement distress. Healthcare professionals can play an important role in encouraging the dialogue. However, it is important to keep in mind that some people not feel comfortable talking about illness and death.

Unveiling the hidden struggles: Exploring the profound impact of advanced stage cutaneous T-cell lymphoma on quality of life.

Erythrodermic mycosis fungoides and Sézary syndrome are chronic, relapsing-remitting diseases that greatly impacts patients' quality of life (QoL). Mogamulizumab-kpkc (Mogamulizumab) is a novel therapeutic agent for cutaneous T-cell lymphomas with a notable impact on progression-free survival. Qualitative assessment methods allow a broader exploration and greater insight in individual patient experience than quantitative studies. However, there is limited data on the impact of mogamulizumab on health-related QoL. To investigate the impact of erythrodermic cutaneous T-cell lymphoma (E-CTCL) on QoL and the effect of mogamulizumab on the QoL. Semi-structured interview were conducted with seven patients with E-CTCL that were receiving mogamulizumab treatment. Five major themes arose: Diagnosis and the diagnostic delay and uncertainty experienced by participants; Physical functioning due to the high symptom burden; Psychological and social functioning considering the significant impact on daily life; Treatment and the effect of mogamulizumab; and Support by family, friends and health professionals. Mogamulizumab therapy resulted in a significant decrease of symptoms. The small sample size should also be taken into account although data saturation was reached. This study gives a broad insight into the large impact of E-CTCL and the major consequences on the physical functioning as well as on the emotional/psychological and social well-being. Mogamulizumab appears to have a positive effect on symptoms.

Harmful communication behaviors in cancer care: A systematic review of patients and family caregivers perspectives.

OBJECTIVE: Issues regarding clinician communication remain an important source of complaints within healthcare. This systematic review aims to determine cancer patients' and their family caregivers' views on which clinicians' communication behaviors can harm (i.e. eliciting negative feelings/consequences for patients/family caregivers). METHODS: We searched for all types of peer-reviewed studies that determined adult (≥18 years) cancer patients' and/or family caregivers' perspectives on which clinicians' communication behaviors can harm in several databases (PubMed, Embase, Web of Science, Cochrane Library, Emcare, PsycINFO and Academic Search Premier), supplemented by expert-consultation. Studies were screened using the Artificial intelligence screening tool of ASReview and data was analyzed using Thematic Analysis. To assess the quality of the studies the Qualsyst critical appraisal tool was used. RESULTS: A total of 47 studies were included. Four main themes of harmful communication behaviors were identified: (1) Lack of tailored information provision (e.g. giving too little or too much/specific information) (2) Lack of tailored decision making (ranging from; patient exclusion, to the patients' responsibility, and/or haste) (3) Lack of feeling seen and heard (seen as a disease, not as a human being; not listened to concerns and emotions) (4) Lack of feeling held and remembered (forgotten agreements; lack of care continuity). CONCLUSIONS: Our results reveal an overview of patients' and family caregivers' perspectives on which clinicians' communication behaviors can harm. Harm could be prevented when information and decision involvement are tailored and patients' and family caregivers' needs to feel seen, heard, held and remembered are met.

Effect of Clinician-Expressed Empathy in Advanced Cancer on Different Ethnic Groups: Results from an Experimental Video-Vignette Study.

Background: In advanced cancer, clinician-expressed empathy can improve patients' psychological outcomes. It remains unknown whether all patients benefit equally from empathy. Objective: To explore whether the effect of clinician-expressed empathy on patients' psychological outcomes is moderated by patient ethnicity. Methods: Using an experimental video-vignette design, 160 participants watched a consultation-video with/without added empathy. Using regression analysis, the moderating effect of ethnicity (non-Western- vs. Dutch/Western-immigration background) on the relationship between empathy and psychological outcomes was assessed. Results: The main effect of empathy on satisfaction (p = 0.001), trust (p = 0.002), and self-efficacy (p < 0.001) was moderated by ethnicity (satisfaction, p = 0.050; trust, p = 0.066; self-efficacy, p = 0.075). No main effect of empathy nor moderation by ethnicity was found for anxiety (state anxiety: p = 0.284, p = 0.319; current anxiety: p = 0.357, p = 0.949). No main effects of ethnicity (satisfaction, p = 0.942; trust, p = 0.724; self-efficacy, p = 0.244; state anxiety, p = 0.812; current anxiety p = 0.523) were found. Conclusion: In advanced cancer, non-Western patients might benefit most from empathy. Dutch Trial Registration Number: NTR NL8992.

Good versus bad news consultations in advanced breast cancer: the role of empathy in information recall - an observational study.

OBJECTIVE: We explored, in advanced breast cancer, whether: (1) patients recall less information following bad versus good news consultations; (2) empathy has a greater effect on recalled information following bad versus good news consultations. METHODS: Observational study using audio-recorded consultations. Participants' recall of provided information about treatment options, aims/positive effects and side-effects was assessed. Clinician-expressed empathy and consultation type were determined. Regression analyses assessed associations between consultation type and recall, exploring moderating influences of clinician-expressed empathy. RESULTS: For 41 consultations (18 bad news, 23 good news), recall data were completed; total recall (47% vs 73%, p=0.03) and recall about treatment options (67% vs 85%, p=0.08, trend) were significantly worse following bad news compared with good news consultations. Recall about treatment aims/positive effects (53% vs 70%, p=0.30) and side-effects (28% vs 49%, p=0.20) was not significantly worse following bad news. Empathy moderated the relationship between consultation type and total recall (p<0.01), recall about treatment options (p=0.03) and about aims/positive effects (p<0.01) but not about side-effects (p=0.10). Only following good news consultations empathy influenced recall favourably. CONCLUSIONS: This explorative study suggests that in advanced cancer, information recall is especially impaired following bad news consultations, for which empathy does not improve remembered information.

How is complementary medicine discussed in oncology? Observing real-life communication between clinicians and patients with advanced cancer.

OBJECTIVE: This study aims to examine the structure of communication about complementary medicine (CM) between patients with cancer and clinicians during oncology consultations. METHODS: Previously, consultations between 29 clinicians and 80 patients with advanced cancer were recorded in six hospitals in the Netherlands. The present study considers a secondary analysis. References to CM during the consultation were coded using a self-developed observational coding scheme. RESULTS: At least one reference to CM was observed in 35 out of 80 consultations (44 %), with a total of 73 references. In most cases, CM was initially referred to by patients. Clinicians often did not elaborate on the subject of CM. Relevant aspects related to CM (e.g., safety, effectiveness) were infrequently discussed. Both patients and clinicians showed predominantly neutral to positive attitudes towards CM. CONCLUSIONS: This study shows that patients are still the main initiators of discussions about CM and the topic is not consistently discussed in daily oncology practice. PRACTICE IMPLICATIONS: If exploration of patients' interest in CM or its use became routine in oncology practice, it may relieve patients of the burden of introducing the topic, decrease potential risks of CM use and increase access to evidence-based CM for all patients with cancer.

Feasibility and effectiveness of tools that support communication and decision making in life-prolonging treatments for patients in hospital: a systematic review.

OBJECTIVE: Patients with advanced diseases and frail older adults often face decisions regarding life-prolonging treatment. Our aim was to provide an overview of the feasibility and effectiveness of tools that support communication between healthcare professionals and patients regarding decisions on life-prolonging treatments in hospital settings. DESIGN: Systematic review: We searched PubMed, CINAHL, PsycINFO, Embase, Cochrane Library and Google Scholar (2009-2019) to identify studies that reported feasibility or effectiveness of tools that support communication about life-prolonging treatments in adult patients with advanced diseases or frail older adults in hospital settings. The Mixed Methods Appraisal Tool was used for quality appraisal of the included studies. RESULTS: Seven studies were included, all involving patients with advanced cancer. The overall methodological quality of the included studies was moderate to high. Five studies described question prompt lists (QPLs), either as a stand-alone tool or as part of a multifaceted programme; two studies described decision aids (DAs). All QPLs and one DA were considered feasible by both patients with advanced cancer and healthcare professionals. Two studies reported on the effectiveness of QPL use, revealing a decrease in patient anxiety and an increase in cues for discussing end-of-life care with physicians. The effectiveness of one DA was reported; it led to more understanding of the treatment in patients. CONCLUSIONS: Use of QPLs or DAs, as a single intervention or part of a programme, may help in communicating about treatment options with patients, which is an important precondition for making informed decisions.

Methodological choices in experimental research on medical communication using vignettes: The impact of gender congruence and vignette modality.

OBJECTIVE: Experimental vignette designs are used to systematically test the effects of medical communication. We tested the impact of two methodological choices -gender congruence and vignette modality- on analogue patient reported outcomes. METHODS: In an online experiment using a vignette portraying an oncological bad news consultation, we manipulated (1) gender congruence between the analogue and the vignette patient, and (2) vignette modality, i.e., text, audio, or video. Cancer-naïve students acting as analogue patients (N = 209, 22 ± 3 years old, 75% F) were assigned one randomly-selected vignette variant and completed questionnaires. Using 3 × 2 (repeated-measures) ANOVAs, we tested main and interaction effects of gender congruence and modality on self-reported engagement, recall, trust, satisfaction and anxiety. RESULTS: We found no main effects of gender congruence or modality on any of the outcomes, nor any interaction effects between modality and congruence. CONCLUSION: Our results indicate that researchers may needlessly create gender-congruent vignettes at considerable cost and effort. Also, the currently assumed superiority of videos over other modalities for experimental vignette-based research may be inaccurate. PRACTICE IMPLICATIONS: Although further testing in an offline format and among different populations is warranted, decisions regarding gender congruence and modality for future vignette-based studies should be based primarily on their specific aims.

Mind your words: Oncologists' communication that potentially harms patients with advanced cancer: A survey on patient perspectives.

BACKGROUND: Many complaints in medicine and in advanced illnesses are about communication. Little is known about which specific communications harm. This study explored the perspectives of patients with advanced cancer about potentially harmful communication behaviors by oncologists and helpful alternatives. METHODS: An online survey design was used that was based on literature scoping and patient/clinician/researcher input. Patients with advanced cancer (n = 74) reflected on the potential harmfulness of 19 communication situations. They were asked whether they perceived the situation as one in which communication could be harmful (yes/no). If they answered "yes," they were asked whether they perceived the examples as harmful (yes/no) or helpful (yes/no) and to provide open comments. Results were analyzed quantitatively and qualitatively (content analysis). RESULTS: Communication regarding information provision, prognosis discussion, decision-making, and empathy could be unnecessarily potentially harmful, and this occurred in various ways, such as making vague promises instead of concrete ones (92%), being too directive in decision-making (qualitative), and not listening to the patient (88%). Not all patients considered other situations potentially harmful (eg, introducing the option of refraining from anticancer therapy [49%] and giving too much [prognostic] information [60%]). Exploring each individual patients' needs/preferences seemed to be a precondition for helpful communication. CONCLUSIONS: This article provides patient perspectives on oncologists' unnecessarily potentially harmful communication behaviors and offers practical tools to improve communication in advanced cancer care. Both preventable pitfalls and delicate challenges requiring an individualized approach, where exploration might help, are described. Although providing difficult and unwelcome news is a core task for clinicians, this study might help them to do so while preventing potentially unnecessary harm.

Addressing challenges in information-provision: a qualitative study among oncologists and women with advanced breast cancer.

BACKGROUND: There is a need for more insight into how to address challenges of information-provision for women with advanced breast cancer. We aimed to explore oncologists' and patients' views on (i) the challenges of information-provision, and (ii) possible strategies to address these challenges, meanwhile (iii) exploring the possible facilitating role of positive expectations and empathy. METHODS: Semi-structured interviews were held with oncologists (n = 10) and women with advanced breast cancer (n = 14). Principles of Thematic Analysis were followed, with two researchers analyzing transcribed data, supported by Atlas.ti software. RESULTS: Taken together the data from oncologists and patients, we found that when communicating with patients with advanced cancer, oncologists face challenges, including handling patients' unrealistic disease (status) beliefs, and choosing approaches for discussing available treatment options and their side effects. Possible strategies to address these challenges include balancing information with acceptance of denial, and using medical expertise to guide treatment discussions. A sensitive issue is whether to discuss the option of no anti-cancer treatment. Meanwhile, approaches and preferences for discussions of side effects vary. Positive expectations and empathy can facilitate information-provision by creating space and helping patients to open up more. CONCLUSIONS: Integrating oncologists' and patients' views, oncologists can provide realistic information while also, temporarily, accepting denial, and can use their medical expertise to address challenges around unrealistic beliefs and discussion of treatment options. Finding ways to tailor discussions of no anti-cancer treatment and side-effect information are needed. Positive expectations and empathy might facilitate - tailored - information-provision, leading ultimately to patient-centered care lying at the heart of medicine.

Health literacy, information provision and satisfaction in advanced cancer consultations: two observational studies using level of education as a proxy.

OBJECTIVES: Patients with low health literacy (LHL) might feel less informed and satisfied with provided information than patients with high health literacy (HHL). In the setting of advanced cancer, we explored whether LHL patients, compared with HHL patients are: (1) often less informed, and (2) less satisfied with clinicians' communication (a) in general and (b) following information provision specifically. METHODS: Data from two observational studies using recorded consultations were combined. Clinicians' provided information and patients' health literacy level-defined by educational levels-and satisfaction were measured. Χ2 tests and regression (moderation) analyses assessed the relation between health literacy and information provision, and between information provision and satisfaction, meanwhile exploring moderating influences of health literacy. RESULTS: Of 61 included patients, 25 (41%) had LHL. LHL and HHL patients were equally seldom informed about the disease's incurability (36% vs 42%, p=0.66). LHL patients were more often informed about the option of not pursuing anticancer therapy than HHL patients (28% vs 8%, p=0.04). LHL patients were more satisfied with clinicians' communication than HHL patients (M=9.3 vs M=8.5, p=0.03), especially when the option of no anticancer treatment was discussed (p=0.04). Discussing the disease's incurability did not influence satisfaction levels (p=0.58) for LHL and HHL patients. CONCLUSIONS: LHL patients were not less informed, yet more satisfied than HHL patients. Both groups were equally seldom informed about the disease's incurability. No anticancer therapy was mostly discussed with LHL patients who were more satisfied following this information. Clinicians should be encouraged to inform all patients about the disease status and (non)treatment options, while not overlooking empathic support.

Explaining placebo effects in an online survey study: Does 'Pavlov' ring a bell?

OBJECTIVES: Despite the increasing knowledge about placebo effects and their beneficial impact on treatment outcomes, strategies that explicitly employ these mechanisms remain scarce. To benefit from placebo effects, it is important to gain better understanding in how individuals want to be informed about placebo effects (for example about the underlying mechanisms that steer placebo effects). The main aim of this study was to investigate placebo information strategies in a general population sample by assessing current placebo knowledge, preferences for different placebo explanations (built around well-known mechanisms involved in placebo effects), and attitudes and acceptability towards the use of placebo effects in treatment. DESIGN: Online survey. SETTING: Leiden, The Netherlands. PARTICIPANTS: 444 participants (377 completers), aged 16-78 years. MAIN OUTCOME MEASURES: Current placebo knowledge, placebo explanation preferences, and placebo attitudes and acceptability. RESULTS: Participants scored high on current placebo knowledge (correct answers: M = 81.15%, SD = 12.75). Comparisons of 8 different placebo explanations revealed that participants preferred explanations based on brain mechanisms and positive expectations more than all other explanations (F(7, 368) = 3.618, p = .001). Furthermore, attitudes and acceptability for placebos in treatment varied for the type of the condition (i.e. more acceptant for psychological complaints) and participants indicated that physicians do not always have to be honest while making use of placebo effects for therapeutic benefit. CONCLUSION: Our results brought forth new evidence in placebo information strategies, and indicated that explanations based on brain mechanisms and positive expectations were most preferred. These results can be insightful to construct placebo information strategies for both clinical context and research practices.

Pre-consultation information about one's physician can affect trust and treatment outcome expectations.

OBJECTIVE: Information about physicians' skills is increasingly available on the internet and consulted by patients. The impact of such information on patient expectations is largely unknown. The aim of the present study was to investigate whether information about the competence and empathic skills of a physician may impact pre-consultation trust and treatment outcome expectations in mild and severe medical conditions. METHODS: In this experimental web-based study, participants (n = 237) read vignettes describing competence and empathic skills (low versus high) of a fictive physician who would surgically remove a mole or melanoma (low versus high severity) following a 2 × 2 × 2 between-subjects design. Participants rated trust in the physician and treatment outcome expectations. RESULTS: High competence and empathy raised trust in the physician, regardless of condition severity. High competence and high empathy both also increased expected surgery success, while only high competence reduced expected side effects. CONCLUSION: Pre-consultation information highlighting a physician's competence and/or empathy may lead to higher trust in that physician, higher expected surgery success, and lower expected side effects. PRACTICE IMPLICATIONS: Physicians and hospital staff should be aware of the effects of written information available and might, for example, provide profiles on hospital websites emphasizing healthcare providers' competence and empathy.

The power of clinician-expressed empathy to increase information recall in advanced breast cancer care: an observational study in clinical care, exploring the mediating role of anxiety.

OBJECTIVE: Experimental studies have found that clinician-expressed empathy improves patients' information recall in (advanced) cancer consultations. It remains unclear, however, whether these results are generalizable to clinical care and, if so, what the underlying mechanism is. We aimed to i) determine the relationship between clinician-expressed empathy and patients' information recall in clinical advanced breast cancer consultations; and ii) test whether the relationship between clinician-expressed empathy and recall is mediated by a decrease in patients' anxiety. METHODS: Forty-one consultations between oncologists and female patients with advanced breast cancer were audio recorded. Patients' post-consultation information recall and pre- and post-consultation anxiety (0-100) were assessed. Recall was scored according to a self-created questionnaire. Clinician-expressed empathy (0-100) was assessed by observers. Structural Equation Modelling was used for all analyses. RESULTS: Participants remembered 61% of the information discussed. Clinician-expressed empathy significantly increased patients' total information recall (p = .041) and recall of treatment aims/positive effects (p = .028). The mediating role of anxiety could not be established. CONCLUSION: Although the underlying mechanism remains unclear, clinicians have a powerful tool to improve seriously ill breast cancer patients' recall of information: empathy. PRACTICE IMPLICATIONS: These insights should encourage clinicians to express empathy; practical communication training might prove helpful.

Instrumental and affective communication with patients with limited health literacy in the palliative phase of cancer or COPD.

BACKGROUND: Patients have a 'need to know' (instrumental need) and a 'need to feel known' (affective need). During consultations with patients with limited health literacy (LHL) in the palliative phase of their disease, both the instrumental and the affective communication skills of healthcare providers are important. The study aims to explore instrumental and affective communication between care providers and LHL patients in the palliative phase of COPD or cancer. METHODS: In 2018, consultations between LHL patients in the palliative phase of cancer or COPD and their healthcare providers were video-recorded in four hospitals in the Netherlands. As there was no observation algorithm available for this setting, several items were created to parameterize healthcare providers' instrumental communication (seven items: understanding, patient priorities, medical status, treatment options, treatment consequences, prognosis, and information about emotional distress) and affective communication (six items: hope, support, reassurance, empathy, appreciation, and emotional coping). The degree of each item was recorded for each consultation, with relevant segments of the observation selected and transcribed to support the items. RESULTS: Consultations between 17 care providers and 39 patients were video-recorded and analyzed. Care providers primarily used instrumental communication, most often by giving information about treatment options and assessing patients' care priorities. Care providers assessed patients' understanding of their disease less often. The patients' prognosis was not mentioned in half the consultations. Within the affective domain, the care providers did provide support for their patients; providing hope, reassurance, empathy, and appreciation and discussing emotional coping were observed less often. CONCLUSIONS: Care providers used mostly instrumental communication, especially treatment information, in consultations with LHL patients in the palliative phase of cancer or COPD. Most care providers did not check if the patient understood the information, which is rather crucial, especially given patients' limited level of health literacy. Healthcare providers did provide support for patients, but other expressions of affective communication by care providers were less common. To adapt the communication to LHL patients in palliative care, care providers could be less wordy and reduce the amount of information, use 'teach-back' techniques and pay more attention to affective communication.

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.