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.

Mapping Systematic Reviews of Breast Cancer Survivorship Interventions: A Network Analysis.

PURPOSE: Despite a large volume of research, breast cancer survivors continue to experience high levels of unmet need. To better understand the breadth of evidence, we mapped systematic review-level evidence across cancer survivorship domains and outcomes and conducted network analyses of breast cancer survivorship care interventions. METHODS: Umbrella review methodology was used to identify published systematic reviews reporting on survivorship care interventions for breast cancer survivors. Included reviews were mapped against domains and health care outcomes as specified by the Cancer Survivorship Quality Framework, and network analyses were conducted to determine the extent of clustering of reviews, and connectivity across domains and outcomes. RESULTS: Of 323 included reviews, most focused on management of physical (71.5%) or psychologic (65.3%) effects, health-related quality of life (55.1%), and physical activity (45.2%). Few focused on financial/employment effects, chronic conditions, health care delivery domains, or health service use or cost outcomes. Network analysis indicated 38.6% of reviews were connected to a single domain, 35.0% to two domains, and 16.5% to three domains, indicating a relatively siloed nature of research, with greater community clustering between health care delivery domains but limited connection between these and the other domains. Reviews published between 2011 and 2021 were more likely to examine financial toxicity and chronic conditions, but these domains remained under-represented compared with physical and psychologic effects. CONCLUSION: Despite vast volume of breast cancer survivorship intervention research, systematic review-level research is unevenly distributed, siloed, and with significant gaps in key domains and outcomes. Assessment of evidence gaps in primary research and strategic planning of future research, in consultation with survivors, is needed.

Asian patients' perspectives on advance care planning: A mixed-method systematic review and conceptual framework.

BACKGROUND: Asian healthcare professionals hold that patients' families play an essential role in advance care planning. AIM: To systematically synthesize evidence regarding Asian patients' perspectives on advance care planning and their underlying motives. DESIGN: Mixed-method systematic review and the development of a conceptual framework (PROSPERO: CRD42018099980). DATA SOURCES: EMBASE, MEDLINE, Web of Science, and Google Scholar were searched for studies published until July 27, 2020. We included studies concerning seriously-ill Asian patients' perspectives on advance care planning or their underlying motives for engaging or not engaging in it. RESULTS: Thirty-six articles were included; 22 were quantitative and 27 were from high-income countries. Thirty-nine to ninety percent of Asian patients were willing to engage in advance care planning. Our framework highlighted that this willingness was influenced not only by their knowledge of their disease and of advance care planning, but also by their beliefs regarding: (1) its consequences; (2) whether its concept was in accordance with their faith and their families' or physicians' wishes; and (3) the presence of its barriers. Essential considerations of patients' engagement were their preferences: (1) for being actively engaged or, alternatively, for delegating autonomy to others; (2) the timing, and (3) whether or not the conversations would be documented. CONCLUSION: The essential first step to engaging patients in advance care planning is to educate them on it and on their diseases. Asian patients' various beliefs about advance care planning should be accommodated, especially their preferences regarding their role in it, its timing, and its documentation.

Improving Care for Patients Living with Prolonged Incurable Cancer.

The number of patients that can no longer be cured but may expect to live with their cancer diagnosis for a substantial period is increasing. These patients with 'prolonged incurable cancer' are often overlooked in research and clinical practice. Patients encounter problems that are traditionally seen from a palliative or survivorship perspective but this may be insufficient to cover the wide range of physical and psychosocial problems that patients with prolonged incurable cancer may encounter. Elements from both fields should, therefore, be delivered concordantly to further optimize care pathways for these patients. Furthermore, to ensure future high-quality care for this important patient population, enhanced clinical awareness, as well as further research, are urgently needed.

Adherence and Concordance between Serious Illness Care Planning Conversations and Oncology Clinician Documentation among Patients with Advanced Cancer.

Background: Serious illness conversations are part of advance care planning (ACP) and focus on prognosis, values, and goals in patients who are seriously ill. To be maximally effective, such conversations must be documented accurately and be easily accessible. Objectives: The two coprimary objectives of the study were to assess concordance between written documentation and recorded audiotaped conversations, and to evaluate adherence to the Serious Illness Conversation Guide questions. Methods: Data were obtained as part of a trial in patients with advanced cancer. Clinicians were trained to use a guide to conduct and document serious illness conversations. Conversations were audiotaped. Two researchers independently compared audiorecordings with the corresponding documentation in an electronic health record (EHR) template and free-text progress notes, and rated the degree of concordance and adherence. Results: We reviewed a total of 25 audiorecordings. Clinicians addressed 87% of the conversation guide elements. Prognosis was discussed least frequently, only in 55% of the patients who wanted that information. Documentation was fully concordant with the conversation 43% of the time. Concordance was best when documenting family matters and goals, and least frequently concordant when documenting prognostic communication. Most conversations (64%) were documented in the template, a minority (28%) only in progress notes and two conversations (8%) were not documented. Concordance was better when the template was used (62% vs. 28%). Conclusion: Clinicians adhered well to the conversation guide. However, key information elicited was documented and fully concordant less than half the time. Greater concordance was observed when clinicians used a prespecified template. The combined use of a guide and EHR template holds promise for ACP conversations.

Measuring Goal-Concordant Care: Results and Reflections From Secondary Analysis of a Trial to Improve Serious Illness Communication.

CONTEXT: Many consider goal-concordant care (GCC) to be the most important of advance care planning and palliative care. Researchers face significant challenges in attempting to measure this outcome. We conducted a randomized controlled trial to assess the effects of a system-level intervention to improve serious illness communication on GCC and other outcomes. OBJECTIVES: To describe our measurement approach to GCC, present findings from a post-hoc analysis of trial data, and discuss lessons learned about measuring GCC. METHODS: Using trial data collected to measure GCC, we analyzed ratings and rankings from a nonvalidated survey of patient priorities in the setting of advanced cancer, the Life Priorities Scale, and compared outcomes with correlative measures. RESULTS: Participants commonly rated several predetermined and literature-derived priorities as important but did so in ways that were commonly incongruent with rankings. Ratings were frequently stable over time; rankings less so. Rankings are more likely to help assess the degree to which care is goal concordant but may be best augmented by corollary measures that signal achievement of a given priority. CONCLUSION: Measuring GCC remains a fundamental challenge to palliative care researchers. Ratings attest to the fact that many things matter to patients; however, rankings can better determine what matters most. Insights gained from our experience may guide future research aiming to use this outcome to assess the effect of intervention to improve serious illness care.

Experiences and needs of patients with incurable cancer regarding advance care planning: results from a national cross-sectional survey.

INTRODUCTION: Patients faced with incurable cancer may experience a lack of support from their physician throughout and after treatment. Studies on the needs and experiences of these patients are scarce. In this study, we explored the needs and experiences of patients diagnosed with incurable cancer regarding the conversation, in which they were told that their cancer was incurable, the care received after this conversation, and their preferences regarding end-of-life conversations. METHODS: Data were cross-sectionally collected through a national online survey in the Netherlands (September 2018). Descriptive statistics and correlation coefficients were reported and subgroups were compared. RESULTS: Six hundred fifty-four patients (mean age 60 years; 58% women) completed the survey. Patients were primarily diagnosed with breast cancer (22%) or a hematological malignancy (21%). Patients reported a strong need for emotional support during the conversation, in which they were told their cancer was incurable (mean score 8.3; scale 1-10). Their experienced satisfaction with received emotional support was mediocre (mean score 6.4; scale 1-10). Of those patients who felt like they did not receive any additional care (37%) after the diagnosis, the majority expressed a clear need for this kind of care (59%). Mostly, support pertained to psychosocial issues. Regarding conversations about the end of life, most patients (62%) expressed a need to discuss this topic, and preferred their healthcare provider to initiate this conversation. CONCLUSION: Care for patients with incurable cancer can be further improved by tailoring conversations to specific needs and timely providing appropriate supportive care services.

A systematic review on the prevalence of symptoms of depression, anxiety and distress in long-term cancer survivors: Implications for primary care.

INTRODUCTION: Symptoms of depression, anxiety and distress are common in the first years after a cancer diagnosis, but little is known about the prevalence of these symptoms at the long term. The aim of this review was to describe the prevalence of symptoms of depression, anxiety and distress in long-term cancer survivors, five or more years after diagnosis, and to provide implications for primary care. METHODS: We performed a systematic literature search in the PubMed, PsycINFO and CINAHL databases. Studies were eligible when reporting on the prevalence of symptoms of depression, anxiety and/or distress in long-term cancer survivors (≥5 years after diagnosis), treated with curative intent. RESULTS: A total of 20 studies were included. The reported prevalence of depressive symptoms (N = 18) varied from 5.4% to 49.0% (pooled prevalence: 21.0%). For anxiety (N = 7), the prevalence ranged from 3.4% to 43.0% (pooled prevalence: 21.0%). For distress (N = 4), the prevalence ranged from 4.3% to 11.6% (pooled prevalence: 7.0%). CONCLUSION: Prevalences of symptoms of depression, anxiety and distress among long-term survivors of cancer do not fundamentally differ from the general population. This is reassuring for primary care physicians, as they frequently act as the primary physician for long-term survivors whose follow-up schedules in the hospital have been completed.

Effect of the Serious Illness Care Program in Outpatient Oncology: A Cluster Randomized Clinical Trial.

Importance: High-quality conversations between clinicians and seriously ill patients about values and goals are associated with improved outcomes but occur infrequently. Objective: To examine feasibility, acceptability, and effect of a communication quality-improvement intervention (Serious Illness Care Program) on patient outcomes. Design, Setting, and Participants: A cluster randomized clinical trial of the Serious Illness Care Program in an outpatient oncology setting was conducted. Patients with advanced cancer (n = 278) and oncology clinicians (n = 91) participated between September 1, 2012, and June 30, 2016. Data analysis was performed from September 1, 2016, to December 27, 2018. All analyses were conducted based on intention to treat. Interventions: Tools, training, and system changes. Main Outcomes and Measures: The coprimary outcomes included goal-concordant care (Life Priorities) and peacefulness (Peace, Equanimity, and Acceptance in the Cancer Experience questionnaire) at the end of life. Secondary outcomes included therapeutic alliance (Human Connection Scale), anxiety (Generalized Anxiety Disorder 7 scale), depression (Patient Health Questionnaire 9), and survival. Uptake and effectiveness of clinician training, clinician use of the conversation tool, and conversation duration were evaluated. Results: Data from 91 clinicians in 41 clusters (72.9% participation; intervention, n = 48; control, n = 43; 52 [57.1%] women) and 278 patients (45.8% participation; intervention, n = 134; control, n = 144; 148 [53.2%] women) were analyzed. Forty-seven clinicians (97.9%) rated the training as effective (mean [SD] score, 4.3 [0.7] of 5.0 possible); of 39 who received a reminder, 34 (87.2%) completed at least 1 conversation (median duration, 19 minutes; range, 5-70). Peacefulness, therapeutic alliance, anxiety, and depression did not differ at baseline. The coprimary outcomes were evaluated in 64 patients; no significant differences were found between the intervention and control groups. However, the trial demonstrated significant reductions in the proportion of patients with moderate to severe anxiety (10.2% vs 5.0%; P = .05) and depression symptoms (20.8% vs 10.6%; P = .04) in the intervention group at 14 weeks after baseline. Anxiety reduction was sustained at 24 weeks (10.4% vs 4.2%; P = .02), but depression reduction was not sustained (17.8% vs 12.5%; P = .31). Survival and therapeutic alliance did not differ between groups. Conclusions and Relevance: The results of this cluster randomized clinical trial were null with respect to the coprimary outcomes of goal-concordant care and peacefulness at the end of life. Methodologic challenges for the primary outcomes, including measure selection and sample size, limit the conclusions that can be drawn from the study. However, the significant reductions in anxiety and depression in the intervention group are clinically meaningful and require further study. Trial Registration: ClinicalTrials.gov identifier: NCT01786811.

A Qualitative Study of Serious Illness Conversations in Patients with Advanced Cancer.

Background: Conversations with seriously ill patients about their values and goals have been associated with reduced distress, a better quality of life, and goal-concordant care near the end of life. Yet, little is known about how such conversations are conducted. Objective: To characterize the content of serious illness conversations and identify opportunities for improvement. Design: Qualitative analysis of audio-recorded, serious illness conversations using an evidence-based guide and obtained through a cluster randomized controlled trial in an outpatient oncology setting. Setting/Measurements: Clinicians assigned to the intervention arm received training to use the "Serious Illness Conversation Guide" to have a serious illness conversation about values and goals with advanced cancer patients. Conversations were de-identified, transcribed verbatim, and independently coded by two researchers. Key themes were analyzed. Results: A total of 25 conversations conducted by 16 clinicians were evaluated. The median conversation duration was 14 minutes (range 4-37), with clinicians speaking half of the time. Thematic analyses demonstrated five key themes: (1) supportive dialogue between patients and clinicians; (2) patients' openness to discuss emotionally challenging topics; (3) patients' willingness to articulate preferences regarding life-sustaining treatments; (4) clinicians' difficulty in responding to emotional or ambiguous patient statements; and (5) challenges in discussing prognosis. Conclusions: Data from this exploratory study suggest that seriously ill patients are open to discussing values and goals with their clinician. Yet, clinicians may struggle when disclosing a time-based prognosis and in responding to patients' emotions. Such skills should be a focus for additional training for clinicians caring for seriously ill patients.

Effects of Shared Decision Making on Distress and Health Care Utilization Among Patients With Lung Cancer: A Systematic Review.

CONTEXT: Lung cancer is associated with significant distress, poor quality of life, and a median prognosis of less than one year. Benefits of shared decision making (SDM) have been described for multiple diseases, either by the use of decisions aids or as part of supportive care interventions. OBJECTIVES: The objective of this study was to summarize the effects of interventions facilitating SDM on distress and health care utilization among patients with lung cancer. METHODS: We performed a systematic literature search in the CINAHL, Cochrane, EMBASE, MEDLINE, and PsychINFO databases. Studies were eligible when conducted in a population of patients with lung cancer, evaluated the effects of an intervention that facilitated SDM, and measured distress and/or health care utilization as outcomes. RESULTS: A total of 12 studies, detailed in 13 publications, were included: nine randomized trials and three retrospective cohort studies. All studies reported on a supportive care intervention facilitating SDM as part of their intervention. Eight studies described effects on distress, and eight studies measured effects on health care utilization. No effect was found in studies measuring generic distress. Positive effects, in favor of the intervention groups, were observed in studies using anxiety-specific measures (n = 1) or depression-specific measures (n = 3). Evidence for reductions in health care utilization was found in five studies. CONCLUSION: Although not supported by all studies, our findings suggest that facilitating SDM in the context of lung cancer may lead to improved emotional outcomes and less aggressive therapies. Future studies, explicitly studying the effects of SDM by using decision aids, are needed to better elucidate potential benefits.