Perception of prognosis and health-related quality of life in patients with advanced cancer: results of a multicentre observational study (eQuiPe).

PURPOSE: To assess perception of prognosis in patients with advanced cancer, its association with patient's characteristics and health-related quality of life (HRQoL). METHODS: In a multicentre observational cohort study (eQuiPe), conducted on patients with advanced cancer, perceived prognosis, coping strategies, and HRQoL were assessed. Clinical data were obtained from the Netherlands Cancer Registry. Patients with vs. without a perception of prognosis, patients who perceived their prognosis as limited (< 1 year) vs. longer (> 1 year), and patients who did not want to know their prognosis vs. those who did not know for other reasons were compared. RESULTS: Of 1000 patients with advanced cancer, 29% perceived their prognosis as > 1 year, 13% < 1 year, and 4% non-life threatening. Thirty-six percent did not know their prognosis and another 15% did not want to know. Patients without a perception were older, lower educated, coped differently (less accepting, planning, active; more denial), and received treatment more often (p < 0.05). Global QoL was lower in patients with vs. without a perceived prognosis (66 (SD21) vs. 69 (SD19), p = 0.01), specifically in patients who perceived a limited rather than a longer prognosis (57 (SD22) vs. 70 (SD19), p < 0.01). Global QoL of patients who did not want to know their prognosis was comparable to patients who did not know for other reasons (71 (SD19) vs. 69 (SD19), p = 0.22). CONCLUSION: More than half of the patients with advanced cancer have no perception of their prognosis. Patients with a perceived prognosis have lower HRQoL, but only in patients who perceived their prognosis as limited (< 1 year) and were probably closer to the end of life, which more likely determines their poorer HRQoL, rather than prognostic perception. Ignorance of prognosis is not associated with lower HRQoL, however, should not hamper appropriate palliative care.

Blended online learning for oncologists to improve skills in shared decision making about palliative chemotherapy: a pre-posttest evaluation.

PURPOSE: To improve shared decision making (SDM) with advanced cancer patients, communication skills training for oncologists is needed. The purpose was to examine the effects of a blended online learning (i.e. e-learning and online training session) for oncologists about SDM in palliative oncological care and to compare this blended format with a more extensive, fully in-person face-to-face training format. METHODS: A one-group pre-posttest design was adopted. Before (T0) and after (T2) training, participants conducted simulated consultations (SPAs) and surveys; after the e-learning (T1), an additional survey was filled out. The primary outcome was observed SDM (OPTION12 and 4SDM). Secondary outcomes included observed SDM per stage, SPA duration and decision made as well as oncologists' self-reported knowledge, clinical behavioural intentions, satisfaction with the communication and evaluation of the training. Additionally, outcomes of the blended learning were compared with those of the face-to-face training cohort. Analyses were conducted in SPSS by linear mixed models. RESULTS: Oncologists (n = 17) showed significantly higher SDM scores after the blended online learning. The individual stages of SDM and the number of times the decision was postponed as well as oncologists' beliefs about capabilities, knowledge and satisfaction increased after the blended learning. Consultation duration was unchanged. The training was evaluated as satisfactory. When compared with the face-to-face training, the blended learning effects were smaller. CONCLUSION: Blended online SDM training for oncologists was effective. However, the effects were smaller compared to face-to-face training. The availability of different training formats provides opportunities for tailoring training to the wishes and needs of learners.

Communicating treatment risks and benefits to cancer patients: a systematic review of communication methods.

PURPOSE: Cancer patients are increasingly involved in decision-making processes. Hence, clinicians need to inform patients about the risks and benefits of different treatment options in order for patients to make well informed decisions. The aim of this review is to determine the effects of methods of communicating prognostic information about (1) disease progression (survival, progression, recurrence and remission), (2) side effects and complications and (3) health-related quality of life (HRQL) on cognitive, affective and behavioral outcomes in cancer patients. METHODS: A literature search was performed to select articles that were published up to  November 2019 and that examined verbal and/or visual risk communication interventions in an oncological clinical setting. RESULTS: The search yielded 14,875 studies; 28 studies were ultimately included. For disease progression information, we found that framing affects treatment choice. Furthermore, limiting the amount of progression information in a graphical display could benefit patients' understanding of risks and benefits. For prognostic information about side effects and complications, precise and defined risk information was better understood than information presented in words. When displaying HRQL data, no consensus was found on which graph type to use. CONCLUSION: Great heterogeneity in the results and methodology and in the compared communication formats precluded us from drawing any further conclusions. Practical implications for clinicians are to consider the effects that different types of framing might have on the patient and to not rely exclusively on words to describe risks, but rather include at least some form of numbers or visualization.

A randomized controlled trial of a skills training for oncologists and a communication aid for patients to stimulate shared decision making about palliative systemic treatment (CHOICE): study protocol.

BACKGROUND: Systemic treatment for advanced cancer offers uncertain and sometimes little benefit while the burden can be high. Hence, treatment decisions require Shared Decision Making (SDM). The CHOICE trial examines the separate and combined effect of oncologist training and a patient communication aid on SDM in consultations about palliative systemic treatment. METHODS: A RCT design with four parallel arms will be adopted. Patients with metastatic or irresectable cancer with a median life expectancy <12 months who meet with a medical oncologist to discuss the start or continuation of palliative systemic treatment are eligible. A total of 24 oncologists (in training) and 192 patients will be recruited. The oncologist training consists of a reader, two group sessions (3.5 h; including modelling videos and role play), a booster feedback session (1 h) and a consultation room tool. The patient communication aid consists of a home-sent question prompt list and a value clarification exercise to prepare patients for SDM in the consultation. The control condition consists of care as usual. The primary outcome is observed SDM in audio-recorded consultations. Secondary outcomes include patient and oncologist evaluation of communication and decision-making, the decision made, quality of life, potential adverse outcomes such as anxiety and hopelessness, and consultation duration. Patients fill out questionnaires at baseline (T0), before (T1) and after the consultation (T2) and at 3 and 6 months (T3 and T4). All oncologists participate in two standardized patient assessments (before-after training) prior to the start of patient inclusion. They will fill out a questionnaire before and after these assessments, as well as after each of the recorded consultations in clinical practice. DISCUSSION: The CHOICE trial will enable evidence-based choices regarding the investment in SDM interventions targeting either oncologists, patients or both in the advanced cancer setting. The trial takes into account the immediate effect of the interventions on observed communication, but also on more distal and potential adverse patient outcomes. Also, the trial provides evidence regarding the assumption that SDM about palliative cancer treatment results in less aggressive treatment and more quality of life in the final period of life. TRIAL REGISTRATION: Netherlands Trial Registry number NTR5489 (prospective; 15 Sep 2015).

Development and feasibility of a web-based question prompt sheet to support information provision of health-related quality of life topics after oesophageal cancer surgery.

We developed a web-based question prompt sheet (QPS) to support information provision of health-related quality of life (HRQL) topics after oesophageal cancer surgery. The QPS was evaluated and updated in three consecutive studies. In Study 1, eight patients were guided in using the QPS. Feasibility was assessed by cognitive walkthrough, questionnaire and interview. We obtained 430 notes (217 negative, 213 positive) of patients' actions and or remarks, and 91 suggestions. With minor support, most patients were able to use the QPS. In Study 2, forty patients independently used and appraised a modified version of the QPS by questionnaire. All patients deemed the QPS to be usable and useful. In Study 3, 21 patients and three surgeons used the QPS in clinical practice. Clinical feasibility was assessed by the number of QPS sent to the researcher/surgeon. Patients and surgeons were surveyed and the follow-up consultation was audio-recorded. Surgeons were additionally interviewed. Twenty/fourteen patients sent their QPS to the researcher/surgeon. Five QPSs were read by the consultation surgeon. Patients considered the QPS usable and useful. Surgeons considered the QPS of added value and helpful in informing patients, but currently not clinically feasible due to increased consultation time.

Burden of spousal caregivers of stage II and III esophageal cancer survivors 3 years after treatment with curative intent.

OBJECTIVES: The aim of this study is to examine caregiver burden of spousal caregivers of patients with esophageal cancer after curative treatment with neoadjuvant chemoradiation followed by resection and to assess factors associated with caregiver burden. METHODS: In this exploratory, cross-sectional study, spousal caregivers and patients were eligible if the caregiver was the patient's spouse and the patient had been treated with chemoradiation followed by surgery after esophageal carcinoma diagnosis. Forty-seven couples were included. Spousal caregivers completed a questionnaire, examining caregivers' burden (Self-Perceived Pressure from Informal Care (SPPIC, Dutch)), caregiver unmet needs (SCNS-P&S), anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), and marital satisfaction (Maudsley Marital Questionnaire (MMQ)). Patients completed the latter two questionnaires and a cancer specific quality of life questionnaire (EORTC-QLQ C30 and OES18 (oesophageal module). Logistic regression analysis was performed to identify correlates for caregiver burden. RESULTS: The median time after esophagectomy was 38 months. Thirty-four percent of the spousal caregivers reported moderate or high burden. Spousal caregivers most frequently reported unmet needs were managing concerns about the cancer coming back (43%), dealing with others not acknowledging the impact on your life of caring for a person with cancer (38%), and balancing the needs of the person with cancer and one's own needs. A comparable proportion of spousal caregivers and patients showed symptoms of anxiety (23 vs 17%) and depression (17 vs 17%). Spousal caregivers reported significantly more dissatisfaction than patients on the marital scale (p < 0.01). Factors independently associated with higher caregiver burden were fatigue of the patient (OR = 1.66, 95% CI 1.12-2.47) and depression of the spousal caregiver (OR = 1.44, 95% CI 1.11-1.86). CONCLUSIONS: More than a third of the spousal caregivers of patients with esophageal cancer treated with curative intent report moderate or high burden 3 years after treatment. Fatigue of the patient and depression of the spousal caregiver are associated with caregiver burden. To improve clinical care, identification of spousal caregivers at risk for experiencing higher caregiver burden and implementation of specific interventions is needed.

Delphi survey to identify topics to be addressed at the initial follow-up consultation after oesophageal cancer surgery.

BACKGROUND: There is no consensus among patients and healthcare professionals (HCPs) on the topics that need to be addressed after oesophageal cancer surgery. The aim of this study was to identify these topics, using a two-round Delphi survey. METHODS: In round 1, patients and HCPs (surgeons, dieticians, nurses) were invited to rate the importance of 49 topics. The proportion of panellists that considered a topic to be of low, moderate or high importance was then calculated for each of these two groups. Based on these proportions and the i.q.r., topics were categorized as: 'consensus to be included', 'consensus to be excluded' and 'no consensus'. Only topics in the first category were included in the second round. In round 2, panellists were provided with individual and group feedback. To be included in the final list, topics had to meet criteria for consensus and stability. RESULTS: There were 108 patients and 77 HCPs in the round 2 analyses. In general, patients and HCPs considered the same topics important. The final list included 23 topics and revealed that it was most important to address: cancer removed/lymph nodes, the new oesophagus, eating and drinking, surgery, alarming new complaints and the recovery period. CONCLUSION: The study provides surgeons with a list of topics selected by patients and HCPs that may be addressed systematically at the initial follow-up consultation after oesophageal cancer surgery.

Meta-analysis shows clinically relevant and long-lasting deterioration in health-related quality of life after esophageal cancer surgery.

PURPOSE: The purpose of the study is to (1) estimate the direction, clinical relevance, and duration of health-related quality-of-life (HRQL) change in the first year following esophageal cancer surgery and (2) to assess the robustness of the estimates by subgroup and sensitivity analyses, and an exploration of publication bias. METHODS: A systematic literature search in MEDLINE, EMBASE, CINAHL, PsychINFO, and CENTRAL to identify randomized and non-randomized studies was performed. We compared the baseline HRQL data with 3-, 6-, 9-, or 12-month follow-ups to estimate the magnitude and duration of HRQL change. These estimates were then classified as trivial, small, medium, or large. Primary outcomes were role functioning, eating, and fatigue. Secondary outcomes were physical and social functioning, dysphagia, pain, and coughing problems. We conducted subgroup analysis for open surgery, open surgery preceded by neoadjuvant therapy, and minimally invasive surgery. Sensitivity analyses assessed the influence of study design, transformation/imputation of the data, and HRQL questionnaire used. RESULTS: We included the data from 15 studies to estimate the change in 28 HRQL outcomes after esophageal cancer surgery. The main analysis showed that patients' social functioning deteriorated. Symptoms of fatigue, pain, and coughing problems increased. These changes lasted for 9-12 months, although some symptoms persisted beyond the first year after surgery. For many other HRQL outcomes, estimates were only robust after subgroup or sensitivity analyses (e.g., role and physical functioning), or remained too heterogeneous to interpret (e.g., eating and dysphagia). CONCLUSIONS: Patients will experience a clinically relevant and long-lasting deterioration in HRQL after esophageal cancer surgery. However, for many HRQL outcomes, more and better quality evidence is needed.

Meta-analysis shows clinically relevant and long-lasting deterioration in health-related quality of life after esophageal cancer surgery.

PURPOSE: The purpose of the study is to (1) estimate the direction, clinical relevance, and duration of health-related quality of life (HRQL) change in the first year following esophageal cancer surgery and (2) to assess the robustness of the estimates by subgroup and sensitivity analyses, and an exploration of publication bias. METHODS: A systematic literature search in MEDLINE, EMBASE, CINAHL, PsychINFO, and CENTRAL to identify randomized and non-randomized studies was performed. We compared the baseline HRQL data with 3-, 6-, 9-, or 12-month follow-ups to estimate the magnitude and duration of HRQL change. These estimates were then classified as trivial, small, medium, or large. Primary outcomes were role functioning, eating, and fatigue. Secondary outcomes were physical and social functioning, dysphagia, pain, and coughing problems. We conducted subgroup analysis for open surgery, open surgery preceded by neo-adjuvant therapy, and minimally invasive surgery. Sensitivity analyses assessed the influence of study design, transformation/imputation of the data, and HRQL questionnaire used. RESULTS: We included data from 15 studies to estimate the change in 28 HRQL outcomes after esophageal cancer surgery. The main analysis showed that patients' social functioning deteriorated. Symptoms of fatigue, pain, and coughing problems increased. These changes lasted for 9-12 months, although some symptoms persisted beyond the first year after surgery. For many other HRQL outcomes, estimates were only robust after subgroup or sensitivity analyses (e.g., role and physical functioning), or remained too heterogeneous to interpret (e.g., eating and dysphagia). CONCLUSIONS: Patients will experience a clinically relevant and long-lasting deterioration in HRQL after esophageal cancer surgery. However, for many HRQL outcomes, more and better quality evidence is needed.

Effect of a prediction tool and communication skills training on communication of treatment outcomes: a multicenter stepped wedge clinical trial (the SOURCE trial).

Background: For cancer patients to effectively engage in decision making, they require comprehensive and understandable information regarding treatment options and their associated outcomes. We developed an online prediction tool and supporting communication skills training to assist healthcare providers (HCPs) in this complex task. This study aims to assess the impact of this combined intervention (prediction tool and training) on the communication practices of HCPs when discussing treatment options. Methods: We conducted a multicenter intervention trial using a pragmatic stepped wedge design (NCT04232735). Standardized Patient Assessments (simulated consultations) using cases of esophageal and gastric cancer patients, were performed before and after the combined intervention (March 2020 to July 2022). Audio recordings were analyzed using an observational coding scale, rating all utterances of treatment outcome information on the primary outcome-precision of provided outcome information-and on secondary outcomes-such as: personalization, tailoring and use of visualizations. Pre vs. post measurements were compared in order to assess the effect of the intervention. Findings: 31 HCPs of 11 different centers in the Netherlands participated. The tool and training significantly affected the precision of the overall communicated treatment outcome information (p = 0.001, median difference 6.93, IQR (-0.32 to 12.44)). In the curative setting, survival information was significantly more precise after the intervention (p = 0.029). In the palliative setting, information about side effects was more precise (p < 0.001). Interpretation: A prediction tool and communication skills training for HCPs improves the precision of treatment information on outcomes in simulated consultations. The next step is to examine the effect of such interventions on communication in clinical practice and on patient-reported outcomes. Funding: Financial support for this study was provided entirely by a grant from the Dutch Cancer Society (UVA 2014-7000).

Addressing patients' information needs: a first evaluation of a question prompt sheet in the pretreatment consultation for patients with esophageal cancer.

This study aims to develop and pilot a question prompt sheet to assist esophageal cancer patients to obtain desired information in the consultation in which potentially curative esophagectomy is discussed. Whether a prompt sheet affected patients' question asking, the number and scope of topics discussed, the length of the consultation, and patients' satisfaction is investigated. Patients (n= 30) were randomized either to receive care as usual (control group) or to receive a prompt sheet (intervention group). All patients completed a baseline questionnaire, their consultations were audio-recorded and content-coded, and they received a structured telephone interview 2 days after the consultation to assess satisfaction. Patients provided with the prompt sheet marked a median of 19 questions. They asked significantly more questions as compared with patients in the control group (median of 12 vs. 8 questions). Questions mainly addressed treatment options and procedures. No differences were found with regard to consultation length and patient satisfaction. Our results suggest that providing patients with a simple, easy-to-implement tool such as a question prompt is appreciated and helps patients to ask more questions during the consultation without increasing the length of the consultation.

Communication about Prognosis during Patient-Initiated Second Opinion Consultations in Advanced Cancer Care: An Observational Qualitative Analysis.

Prognostic communication is essential for patients with advanced cancer to enable informed medical decision-making and end-of-life planning. Discussing prognosis is challenging, and might be especially complex for oncologists conducting a second opinion (SO). Survival data are often lacking, and consulting oncologists need to consider previously conveyed information and patients' relationship with the referring oncologist. We qualitatively investigated how advanced cancer patients and consulting oncologists discuss prognosis during audio-recorded SO consultations (N = 60), including prognostic information received from the referring oncologist. Our results show that patients regularly expressed implicit cues to discuss prognosis or posed explicit questions tentatively. Consulting oncologists were mostly unresponsive to patients' cues and cautious to prognosticate. They also seemed cautious when patients brought up the referring oncologist. Consulting oncologists checked which prognostic information patients had received from the referring oncologist, before estimating prognosis. They agreed with the first opinion or rectified discrepancies carefully. Altogether, this study exposes missed opportunities for open prognostic discussions in SOs. Consulting oncologists could explicitly explore patients' information preferences and perceptions of prognosis. If desired, they can provide tailored, independent information to optimise patients' prognostic awareness and informed medical decision-making. They may additionally support patients in dealing with prognosis and the uncertainties associated with it.

[Shared decision-making for good care; we cannot make it any easier]. / Gedeelde besluitvorming voor goede zorg.

Despite the increase in treatment options and the rise of patient empowerment, cancer can still make people vulnerable and insecure. In such cases, an appeal on autonomy can be a burden. We argue that the main goal of shared decision-making is, however, not to have patients make autonomous choices, but to be able to provide high quality patient-centred care.

How long do I have? Observational study on communication about life expectancy with advanced cancer patients.

OBJECTIVE: To examine how communication about life expectancy is initiated in consultations about palliative chemotherapy, and what prognostic information is presented. METHODS: Patients with advanced cancer (n=41) with a median life expectancy <1year and oncologists (n=6) and oncologists-in-training (n=7) meeting with them in consultations (n=62) to discuss palliative chemotherapy were included. Verbatim transcripts of audio-recorded consultations were analyzed using MAXqda10. RESULTS: Life expectancy was addressed in 19 of 62 of the consultations. In all cases, patients took the initiative, most often through direct questions. Estimates were provided in 12 consultations in various formats: the likelihood of experiencing a significant event, point estimates or general time scales of "months to years", often with an emphasis on the "years". The indeterminacy of estimates was consistently stressed. Also their potential inadequacy was regularly addressed, often by describing beneficial prognostic predictors for the specific patient. Oncologists did not address the reliability or precision of estimates. CONCLUSION: Oncologists did not initiate talk about life expectancy, they used different formats, emphasized the positive and stressed unpredictability, yet not ambiguity of estimates. PRACTICE IMPLICATIONS: Prognostic communication should be part of the medical curriculum. Further research should address the effect of different formats of information provision.