Continuity of care for patients with de novo metastatic cancer during the COVID-19 pandemic: A population-based observational study.

During the COVID-19 pandemic recommendations were made to adapt cancer care. This population-based study aimed to investigate possible differences between the treatment of patients with metastatic cancer before and during the pandemic by comparing the initial treatments in five COVID-19 periods (weeks 1-12 2020: pre-COVID-19, weeks 12-20 2020: 1st peak, weeks 21-41 2020: recovery, weeks 42-53 2020: 2nd peak, weeks 1-20 2021: prolonged 2nd peak) with reference data from 2017 to 2019. The proportion of patients receiving different treatment modalities (chemotherapy, hormonal therapy, immunotherapy or targeted therapy, radiotherapy primary tumor, resection primary tumor, resection metastases) within 6 weeks of diagnosis and the time between diagnosis and first treatment were compared by period. In total, 74,208 patients were included. Overall, patients were more likely to receive treatments in the COVID-19 periods than in previous years. This mainly holds for hormone therapy, immunotherapy or targeted therapy and resection of metastases. Lower odds were observed for resection of the primary tumor during the recovery period (OR 0.87; 95% CI 0.77-0.99) and for radiotherapy on the primary tumor during the prolonged 2nd peak (OR 0.84; 95% CI 0.72-0.98). The time from diagnosis to the start of first treatment was shorter, mainly during the 1st peak (average 5 days, p < .001). These findings show that during the first 1.5 years of the COVID-19 pandemic, there were only minor changes in the initial treatment of metastatic cancer. Remarkably, time from diagnosis to first treatment was shorter. Overall, the results suggest continuity of care for patients with metastatic cancer during the pandemic.

Trajectories of health-related quality of life and symptom burden in patients with advanced cancer towards the end of life: Longitudinal results from the eQuiPe study.

BACKGROUND: Support for health-related quality of life (HRQOL) is an essential part of cancer care in the final stages of life, yet empirical guidance regarding HRQOL and symptom trajectories is lacking. AIM: To assess the change in HRQOL and symptom burden in the last year of life in patients with advanced cancer and its association with health care-related factors, cancer-specific treatment, and comorbidity. METHODS: A prospective, multicenter, observational study in patients with advanced cancer (eQuiPe). Three monthly questionnaires included European Organization for Research and Treatment of Cancer Quality of Life-C30 and reported continuity of care. Multivariable mixed-effects analysis was used to assess the association between HRQOL and health care-related factors. RESULTS: A total of 762 deceased patients were included with a mean age of 66 (SD, 10) years and 52% were male. The most common primary tumors were lung (29%), colorectal (20%), and breast cancer (13%). Mean overall HRQOL decreased in the last 9 months of life, with the greatest decrease in the last 3 months (ß -16.2). Fatigue, pain, appetite loss, dyspnea, constipation, and nausea worsened significantly in the last year of life. Multimorbidity (ß -7.5) and a better reported continuity of care (ß 0.7) were both significantly associated with the trajectory of HRQOL. CONCLUSION: Mean overall HRQOL begins to decline 9 months before death, highlighting the need for early identification and (re)assessment of different symptoms as aspects of HRQOL follow different trajectories. Multimorbidity and reported continuity of care may be associated with the trajectory of HRQOL.

Characteristics of timely integration of palliative care into oncology hospital care for patients with incurable cancer: results of a Delphi Study.

PURPOSE: To identify elements of timely integration of palliative care (PC) into hospital oncology care from best practices. Thereafter, to assess the level of consensus among oncology and PC specialists and patient and relative representatives on the characteristics of timely integration of PC. METHODS: A three-round modified Delphi study was conducted. The expert panel consisted of 83 healthcare professionals (HCPs) from 21 Dutch hospitals (43 physicians, 40 nurses), 6 patient and 2 relative representatives. In the first round, four elements of integrated PC were considered: (1) identification of potential PC needs, (2) advance care planning (ACP), (3) routine symptom monitoring and (4) involvement of the specialist palliative care team (SPCT). In subsequent rounds, the panellists assessed which characteristics were triggers for initiating an element. A priori consensus was set at ≥ 70%. RESULTS: A total of 71 (78%) panellists completed the first questionnaire, 65 (71%) the second and 49 (54%) the third. Panellists agreed that all patients with incurable cancer should have their PC needs assessed (97%), symptoms monitored (91%) and ACP initiated (86%). The SPCT should be involved at the patient's request (86%) or when patients suffer from increased symptom burden on multiple dimensions (76%). Patients with a life expectancy of less than 3 months should be offered a consultation (71%). CONCLUSION: The expert panel agreed that timely integration of PC into oncology is important for all patients with incurable cancer, using early identification, ACP and routine symptom monitoring. Involvement of the SPCT is particularly needed in patients with multidimensional symptom burden and in those nearing death.

Reduction in potentially inappropriate end-of-life hospital care for cancer patients during the COVID-19 pandemic: A retrospective population-based study.

BACKGROUND: The COVID-19 pandemic impacted cancer diagnosis and treatment. However, little is known about end-of-life cancer care during the pandemic. AIM: To investigate potentially inappropriate end-of-life hospital care for cancer patients before and during the COVID-19 pandemic. DESIGN: Retrospective population-based cohort study using data from the Netherlands Cancer Registry and the Dutch National Hospital Care Registration. Potentially inappropriate care in the last month of life (chemotherapy administration, >1 emergency room contact, >1 hospitalization, hospitalization >14 days, intensive care unit admission or hospital death) was compared between four COVID-19 periods and corresponding periods in 2018/2019. PARTICIPANTS: A total of 112,919 cancer patients (⩾18 years) who died between January 2018 and May 2021 were included. RESULTS: Fewer patients received potentially inappropriate end-of-life care during the COVID-19 pandemic compared to previous years, especially during the first COVID-19 peak (22.4% vs 26.0%). Regression analysis showed lower odds of potentially inappropriate end-of-life care during all COVID-19 periods (between OR 0.81; 95% CI 0.74-0.88 and OR 0.92; 95% CI 0.87-0.97) after adjustment for age, sex and cancer type. For the individual indicators, fewer patients experienced multiple or long hospitalizations, intensive care unit admission or hospital death during the pandemic. CONCLUSIONS: Cancer patients received less potentially inappropriate end-of-life care during the COVID-19 pandemic. Because several factors may have contributed, it is unclear whether this reflects better quality care. However, these findings raise important questions about what pandemic-induced changes in care practices can help provide appropriate end-of-life care for future patients in the context of increasing patient numbers and limited resources.

Quality of life issues in patients with bone metastases: A systematic review.

INTRODUCTION: Bones are frequent sites of metastatic disease, observed in 30-75% of advanced cancer patients. Quality of life (QoL) is an important endpoint in studies evaluating the treatments of bone metastases (BM), and many patient-reported outcome tools are available. The primary objective of this systematic review was to compile a list of QoL issues relevant to BM and its interventions. The secondary objective was to identify common tools used to assess QoL in patients with BM, and the QoL issues they fail to address. METHODS: A search was conducted on Ovid MEDLINE, EMBASE, and Cochrane Central Register of Controlled Trials databases between 1946 and 27 January 2023 with the keywords "bone metastases", "quality of life", and "patient reported outcomes". Specific QoL issues in original research studies and the QoL tools used were extracted. RESULTS: The review identified the QoL issues most prevalent to BM in the literature. Physical and functional issues observed in patients included pain, interference with ambulation and daily activities, and fatigue. Psychological symptoms, such as helplessness, depression, and anxiety were also common. These issues interfered with patients' relationships and social activities. Items not mentioned in existing QoL tools were related to newer treatments of BM, such as pain flare, flu-like symptoms, and jaw pain due to osteonecrosis. CONCLUSIONS: This systematic review highlights that QoL issues for patients with BM have expanded over time due to advances in BM-directed treatments. If they are relevant, additional treatment-related QoL issues identified need to be validated prospectively by patients and added to current assessment tools.

Dry mouth in patients with a life-limiting condition or frailty: a study protocol for two intervention studies and a nested qualitative sub-study (the Dry mOuth Project, DROP).

BACKGROUND: Despite its prevalent and impactful nature, dry mouth remains an underexposed and undertreated symptom in patients with a life-limiting condition or frailty. The main contributing factors are a lack of awareness and knowledge amongst both healthcare professionals and patients, and a scarcity of effective, evidence-based interventions. In the DRy mOuth Project (DROP), we address these factors by investigating both a non-pharmacological and a pharmacological intervention: a nurse-led patient education program and locally applied pilocarpine. METHODS: This intervention-based research project consists of two parallel studies. The non-pharmacological study is a cluster non-randomized controlled trial in 228 palliative nursing home and hospital patients, investigating the effect of structured use of guidelines and of patient education on dry mouth symptoms. This intervention, a nurse-led patient education program (the Mouth Education Program, MEP), will be compared to care as usual, the control. The pharmacological study is a double-blind placebo-controlled randomized trial that examines the effect of locally applied pilocarpine drops in 120 patients with dry mouth symptoms. Both studies use the same mixed-methods study design, in which the primary outcome is the clinical response to the intervention at 4 weeks, as measured by a dry mouth severity score (numeric rating scale from 0 to 10). Other outcomes, as measured by questionnaires over a 12-week follow-up period, include durability of the effect, impact on quality of life and, adherence and acceptability of the intervention. In addition, the feasibility and cost-effectiveness are evaluated by means of questionnaires and focus groups with healthcare professionals, and interviews with patients. DISCUSSION: This study investigates the effectiveness and feasibility of two interventions for dry mouth symptoms in patients with life-limiting conditions or frailty. Due to the large-scale and mixed-method nature of the study, this study will also improve our understanding of dry mouth and its relating factors and of the patients' and healthcare professionals' experiences with symptoms, care and guidelines of dry mouth, including any perceived barriers and facilitators. TRIAL REGISTRATION: NCT05964959 & NCT05506137.

Nursing assistants' perceptions and experiences with the emotional impact of providing palliative care: A qualitative interview study in nursing homes.

AIM: To gain insight into the perceived emotional impact of providing palliative care among nursing assistants in Dutch nursing homes, their strategies in coping with this impact and associated needs. DESIGN: Exploratory qualitative study. METHODS: In 2022, 17 semistructured interviews with nursing assistants working in Dutch nursing homes were conducted. Participants were recruited via personal networks and social media. Interviews were open-coded by three independent researchers following the thematic analysis approach. RESULTS: Three themes emerged regarding the elements that contribute to the emotional impact of providing palliative care in nursing homes: impactful situations (e.g. witnessing suffering and sudden deaths), interactions (e.g. close relationship and receiving gratitude) and reflection on provided care (e.g. feeling fulfilment or feeling inadequate in caring). Nursing assistants used different strategies to cope, including emotional processing activities, their attitude towards death and work and gaining experience. Participants experienced a need for more education in palliative care and organized peer group meetings. CONCLUSION: Elements that play a role in how the emotional impact of providing palliative care is perceived by nursing assistants can have a positive or negative impact. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Nursing assistants should be better supported in coping with the emotional impact of providing palliative care. IMPACT: In nursing homes, nursing assistants are most involved in providing daily care to residents and have a signalling role in recognizing the deteriorating conditions of residents. Despite their prominent role, little is known about the emotional impact of providing palliative care among these professionals. This study shows that although nursing assistants already undertake various activities to reduce the emotional impact, employers should be aware of the unmet needs in this area and the responsibility they have in this regard. REPORTING METHOD: The QOREQ checklist was used for reporting. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Clinicians' perceptions of the emotional impact of providing palliative care: A qualitative interview study.

OBJECTIVES: Many aspects of palliative care, such as managing (complicated) symptoms, conducting goals-of-care conversations, and repeated exposure to loss, can be stressful to clinicians. Previous research on the emotional impact of providing palliative care was mainly done in specialist settings. However, the majority of palliative care is provided by clinicians who are not specialized in palliative care, and can be supported by palliative care specialists only when needed. Therefore, this study aimed to gain insight into the emotional impact of providing palliative care on clinicians, both palliative care generalists and specialists. METHODS: A qualitative interview study among 21 clinicians (11 doctors and 10 nurses) working in hospitals, home care, or nursing homes in the Netherlands was conducted. Between February and June 2019, 13 palliative care generalists and 8 specialists were interviewed. Interviews were thematically analyzed by two researchers. RESULTS: All clinicians considered the emotional impact of providing palliative care to be substantial and experienced both positive and negative aspects of providing palliative care. Several aspects of providing palliative care can support or undermine emotional stability. These so-called facilitators and barriers, such as practicing self-care and complexity of palliative care, were found at three different levels: individual, team, and organization. SIGNIFICANCE OF RESULTS: Although clinicians experience providing palliative care as meaningful and valuable, the emotional impact is considerable. Negative and positive aspects often co-exist. Further insight into the dynamics and magnitude of the emotional impact of providing palliative care is needed in order to create a healthy working environment and develop adequate interventions.

Barriers and facilitators to multidimensional symptom management in palliative care: A focus group study among patient representatives and clinicians.

OBJECTIVES: It is widely acknowledged that co-occurring symptoms in patients with a psychosocial and spiritual aspects should also be considered. However, this multidimensional approach is difficult to integrate into daily practice, especially for generalist clinicians not specialized in palliative care. We aimed to identify the barriers and facilitators to multidimensional symptom management. METHODS: Focus group meetings were conducted with the following stakeholders: (1) patient representatives, (2) generalist community nurses, (3) generalist hospital nurses, (4) general practitioners, (5) generalist hospital physicians, and (6) palliative care specialists. Audiotapes were transcribed verbatim and thematically analyzed. RESULTS: Fifty-one participants (6-12 per group) reported barriers and facilitators with 3 main themes: multidimensional symptom assessment, initiating management of nonphysical problems, and multidisciplinary collaboration. As barriers, generalist clinicians and palliative care specialists reported that generalist clinicians often lack the communication skills to address nonphysical problems and are unaware of available resources for multidimensional symptom management. Palliative care specialists felt that generalist clinicians may be unaware that assessing nonphysical problems is important and focus on pharmacological interventions. Generalist nurses and palliative care specialists indicated that hierarchical difficulties between them and generalist physicians are barriers to multidisciplinary collaboration. Reported facilitators included using symptom assessment scales and standardized questions on nonphysical problems. SIGNIFICANCE OF RESULTS: Generalist clinicians can be supported by improving their communication skills, increasing their awareness of available resources for multidimensional symptom management, and by using a standardized approach to assess all 4 dimensions of palliative care.

European Society for Radiotherapy and Oncology and European Organisation for Research and Treatment of Cancer consensus on re-irradiation: definition, reporting, and clinical decision making.

Re-irradiation can be considered for local recurrence or new tumours adjacent to a previously irradiated site to achieve durable local control for patients with cancer who have otherwise few therapeutic options. With the use of new radiotherapy techniques, which allow for conformal treatment plans, image guidance, and short fractionation schemes, the use of re-irradiation for different sites is increasing in clinical settings. Yet, prospective evidence on re-irradiation is scarce and our understanding of the underlying radiobiology is poor. Our consensus on re-irradiation aims to assist in re-irradiation decision making, and to standardise the classification of different forms of re-irradiation and reporting. The consensus has been endorsed by the European Society for Radiotherapy and Oncology and the European Organisation for Research and Treatment of Cancer. The use of this classification in daily clinical practice and research will facilitate accurate understanding of the clinical implications of re-irradiation and allow for cross-study comparisons. Data gathered in a uniform manner could be used in the future to make recommendations for re-irradiation on the basis of clinical evidence. The consensus document is based on an adapted Delphi process and a systematic review of the literature was done according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA).

The prognostic value of the 12-, 6-, 3- and 1-month 'Surprise Question' in cancer patients: A prospective cohort study in three hospitals.

OBJECTIVE: This prospective study aimed to evaluate the performance of the 'Surprise Question' (SQ) 'Would I be surprised if this patient died in the next 12 months?' in predicting survival of 12, 6, 3 and 1 month(s), respectively, in hospitalised patients with cancer. METHODS: In three hospitals, physicians were asked to answer SQs for 12/6/3/1 month(s) for inpatients with cancer. Sensitivity, specificity, positive and negative predictive values were calculated. RESULTS: A total of 783 patients were included, of whom 51% died in the 12-month period after inclusion. Sensitivity of the SQ predicting death within 12 months was 0.79, specificity was 0.66, the positive predictive value was 0.71 and the negative predictive value was 0.75. When the SQ concerned a shorter survival period, sensitivities and positive predictive values decreased, whereas specificities and negative predictive values increased. In multivariable logistic regression analysis, the SQ was significantly associated with mortality (OR 3.93, 95% CI 2.70-5.71, p < 0.01). CONCLUSIONS: The 12-month SQ predicts death in patients with cancer admitted to the hospital reasonably well. Shortening the timeframe decreases sensitivities and increases specificities. The four surprise questions may help to identify patients for whom palliative care is indicated.

Assessment of patient symptom burden and information needs helps tailoring palliative care consultations: An observational study.

OBJECTIVE: The objective of this study is to study (1) the relationship between patient-reported symptom burden and information needs in hospital-based palliative care and (2) differences in patient-reported needs during the disease trajectory. METHODS: Observational study: patient-reported symptom burden and information needs were collected via a conversation guide comprising assessment scales for 12 symptoms (0-10), the question which symptom has priority to be solved and a question prompt list on 75 palliative care-related items (35 topics, 40 questions). Non-parametric tests assessed associations. RESULTS: Conversation guides were used by 266 patients. Median age was 65 years (IQ-range, 57-72), 49% were male and 96% had cancer. Patients reported highest burden for Fatigue (median = 7) and Loss of appetite (median = 6) and prioritised Pain (26%), Fatigue (9%) and Shortness of breath (9%). Patients wanted information about 1-38 (median = 14) items, mostly Fatigue (68%), Possibilities to manage future symptoms (68%) and Possible future symptoms (67%). Patients also wanted information about symptoms for which they reported low burden. Patients in the symptom-directed phase needed more information about hospice care. CONCLUSION: Symptom burden and information needs are related. Patients often also want information about non-prioritised symptoms and other palliative care domains. Tailored information-provision includes inviting patients to also discuss topics they did not consider themselves.

A simple risk score list can be used to predict the occurrence of delirium in patients admitted to inpatient hospice care: A medical record study.

OBJECTIVE: This study aimed to examine whether the 10-item Risk Score List (RSL) accurately predicts delirium in patients admitted to inpatient hospice care and whether this instrument can be simplified. Determining the risk for developing delirium can help to treat these patients in a timely manner. METHODS: This was a retrospective medical record study in patients who died in 2019 or 2020 in three hospices. Predictive values were examined using Cox regression analysis, crosstabs, and C-statistic. RESULTS: In total, 240 patients were included. Median age at admission was 78 (IQR 70-84) years. Primary diagnosis most often was cancer (n = 186, 78%); 173 (72%) patients had an increased risk of delirium according to RSL, of whom 120 (69%) developed delirium. Overall, 147 (61%) patients developed delirium. The RSL significantly predicted future delirium (HR 3.25, CI 1.87-5.65, p < 0.01) and had a sensitivity of 85%, a specificity of 43%, positive predictive value of 62%, negative predictive value of 73%, and a C-statistic of 0.64. Simplifying the RSL to four items still significantly predicted future delirium, with similar predictive values. CONCLUSION: Delirium occurs in more than half of patients admitted to hospice care. The RSL can be simplified to four items, without compromising on predictive accuracy.

Prevalence of burnout in healthcare professionals providing palliative care and the effect of interventions to reduce symptoms: A systematic literature review.

BACKGROUND: In recent years there has been increasing attention for the prevalence and prevention of burnout among healthcare professionals. There is unclarity about prevalence of burnout in healthcare professionals providing palliative care and little is known about effective interventions in this area. AIM: To investigate the prevalence of (symptoms of) burnout in healthcare professionals providing palliative care and what interventions may reduce symptoms of burnout in this population. DESIGN: A systematic literature review based on criteria of the PRISMA statement was performed on prevalence of burnout in healthcare professionals providing palliative care and interventions aimed at preventing burnout. DATA SOURCES: PubMed, PsycInfo and Cinahl were searched for studies published from 2008 to 2020. Quality of the studies was assessed using the method of Hawkers for systematically reviewing research. RESULTS: In total 59 studies were included. Burnout among healthcare professionals providing palliative care ranged from 3% to 66%. No major differences in prevalence were found between nurses and physicians. Healthcare professionals providing palliative care in general settings experience more symptoms of burnout than those in specialised palliative care settings. Ten studies reported on the effects of interventions aimed at preventing burnout. Reduction of one or more symptoms of burnout after the intervention was reported in six studies which were aimed at learning meditation, improving communication skills, peer-coaching and art-therapy based supervision. CONCLUSION: The range of burnout among healthcare professionals providing palliative care varies widely. Interventions based on meditation, communication training, peer-coaching and art-therapy based supervision have positive effects but long-term outcomes are not known yet.

Palliative care needs of advanced cancer patients in the emergency department at the end of life: an observational cohort study.

PURPOSE: Patients with advanced cancer commonly visit the emergency department (ED) during the last 3 months of life. Identification of these patients and their palliative care needs help initiating appropriate care according to patients' wishes. Our objective was to provide insight into ED visits of advanced cancer patients at the end of life. METHODS: Adult palliative patients with solid tumours who died < 3 months after their ED visit were included (2011-2014). Patients, ED visits, and follow-up were described. Factors associated with approaching death were assessed using Cox proportional hazards models. RESULTS: Four hundred twenty patients were included, 54.5% was male, median age 63 years. A total of 54.6% was on systemic anti-cancer treatments and 10.5% received home care ≥ 1 per day. ED visits were initiated by patients and family in 34.0% and 51.9% occurred during out-of-office hours. Dyspnoea (21.0%) or pain (18.6%) were most reported symptoms. Before the ED visit, limitations on life-sustaining treatments were discussed in 33.8%, during or after the ED visit in 70.7%. Median stay at the ED was 3:29 h (range 00:12-18:01 h), and 319 (76.0%) were hospitalized. Median survival was 18 days (IQ range 7-41). One hundred four (24.8%) died within 7 days after the ED visit, of which 71.2% in-hospital. Factors associated with approaching death were lung cancer, neurologic deterioration, dyspnoea, hypercalcemia, and jaundice. CONCLUSION: ED visits of advanced cancer patients often lead to hospitalization and in-hospital deaths. Timely recognition of patients with limited life expectancies and urgent palliative care needs, and awareness among ED staff of the potential of ED-initiated palliative care may improve the end-of-life trajectory of these patients.

The association between palliative care team consultation and hospital costs for patients with advanced cancer: An observational study in 12 Dutch hospitals.

BACKGROUND: Early palliative care team consultation has been shown to reduce costs of hospital care. The objective of this study was to investigate the association between palliative care team (PCT) consultation and the content and costs of hospital care in patients with advanced cancer. MATERIAL AND METHODS: A prospective, observational study was conducted in 12 Dutch hospitals. Patients with advanced cancer and an estimated life expectancy of less than 1 year were included. We compared hospital care during 3 months of follow-up for patients with and without PCT involvement. Propensity score matching was used to estimate the effect of PCTs on costs of hospital care. Additionally, gamma regression models were estimated to assess predictors of hospital costs. RESULTS: We included 535 patients of whom 126 received PCT consultation. Patients with PCT had a worse life expectancy (life expectancy <3 months: 62% vs. 31%, p < .01) and performance status (p < .01, e.g., WHO status higher than 2:54% vs. 28%) and more often had no more options for anti-tumour therapy (57% vs. 30%, p < .01). Hospital length of stay, use of most diagnostic procedures, medication and other therapeutic interventions were similar. The total mean hospital costs were €8,393 for patients with and €8,631 for patients without PCT consultation. Analyses using propensity scores to control for observed confounding showed no significant difference in hospital costs. CONCLUSIONS: PCT consultation for patients with cancer in Dutch hospitals often occurs late in the patients' disease trajectories, which might explain why we found no effect of PCT consultation on costs of hospital care. Earlier consultation could be beneficial to patients and reduce costs of care.

Patient explicit consideration of tradeoffs in decision making about rectal cancer treatment: benefits for decision process and quality of life.

Introduction: Patient preferences are often not discussed in treatment decisions in oncology. We introduced an online values clarification method (VCM) to help newly diagnosed rectal cancer patients participate in shared decision making about short-course preoperative radiotherapy. Material and Methods: We offered a link to the VCM to a subset of consecutive patients before the pretreatment consultation with the radiation oncologist. Consultations were audiotaped and coded for expressions of patient preferences. Patients were asked to complete pre- and post-consultation questionnaires. Questionnaires assessed values clarity, decision regret and presence and impact of fecal incontinence and sexual problems. Results: Of 135 patients who had their consultation audiotaped and completed questionnaires, 35 received and accessed the VCM-link. Patients in the VCM-group slightly more often expressed preferences during consultations. Questionnaire data showed that patients in the VCM-group did not differ in how clear their values were, but experienced lower regret and less impact of treatment harms at 6 months follow-up; differences were non-significant but in the same direction at 12 months. Discussion: This is the first study to assess the effect of an adaptive conjoint analysis-based VCM on actual patient-clinician communication, and long-term decision regret and impact of treatment harms. Being explicitly invited to think about treatment benefits and harms seems to help patients to live with treatment consequences.

Survival after whole brain radiotherapy for brain metastases from lung cancer and breast cancer is poor in 6325 Dutch patients treated between 2000 and 2014.

BACKGROUND: Whole brain radiotherapy (WBRT) is considered standard of care for patients with multiple brain metastases or unfit for radical treatment modalities. Recent studies raised discussion about the expected survival after WBRT. Therefore, we analysed survival after WBRT for brain metastases 'in daily practice' in a large nationwide multicentre retrospective cohort. METHODS: Between 2000 and 2014, 6325 patients had WBRT (20 Gy in 4 Gy fractions) for brain metastases from non-small cell lung cancer (NSCLC; 4363 patients) or breast cancer (BC; 1962 patients); patients were treated in 15 out of 21 Dutch radiotherapy centres. Survival was calculated by the Kaplan-Meier method from the first day of WBRT until death as recorded in local hospital data registration or the Dutch Municipal Personal Records Database. FINDINGS: The median survival was 2.7 months for NSCLC and 3.7 months for BC patients (p < .001). For NSCLC patients aged <50, 50-60, 60-70 and >70 years, survival was 4.0, 3.0, 2.8 and 2.1 months, respectively (p < .001). For BC patients, survival was 4.5, 3.8, 3.2 and 2.9 months, respectively (p = .047). In multivariable analyses, higher age was related to poorer survival with hazard ratios (HR) for patients aged 50-60, 60-70 and >70 years being 1.05, 1.19 and 1.34, respectively. Primary BC (HR: 0.83) and female sex (HR: 0.85) were related to better survival (p < .001). INTERPRETATION: The survival of patients after WBRT for brain metastases from NSCLC treated in Dutch 'common radiotherapy practice' is poor, in breast cancer and younger patients it is disappointingly little better. These results are in line with the results presented in the QUARTZ trial and we advocate a much more restrictive use of WBRT. In patients with a more favourable prognosis the optimal treatment strategy remains to be determined. Prospective randomized trials and individualized prognostic models are needed to identify these patients and to tailor treatment.

Minimal clinically important differences in the EORTC QLQ-C30 and brief pain inventory in patients undergoing re-irradiation for painful bone metastases.

PURPOSE: The EORTC QLQ-C30 and the Brief Pain Inventory (BPI) are validated tools for measuring quality of life (QOL) and the impact of pain in patients with advanced cancer. Interpretation of these instrument scores can be challenging and it is difficult to know what numerical changes translate to clinically significant impact in patients' lives. To address this issue, our study sought to establish the minimal clinically important differences (MCID) for these two instruments in a prospective cohort of patients with advanced cancer and painful bone metastases. METHODS: Both anchor-based and distribution-based methods were used to estimate the MCID scores from patients enrolled in a randomized phase III trial evaluating two different re-irradiation treatment schedules. For the anchor-based method, the global QOL item from the QLQ-C30 was chosen as the anchor. Spearman correlation coefficients were calculated for all items and only those items with moderate or better correlation (|r| ≥ 0.30) with the anchor were used for subsequent analysis. A 10-point difference in the global QOL score was used to classify improvement and deterioration, and the MCID scores were calculated for each of these categories. These results were compared with scores obtained by the distribution-method, which estimates the MCID purely from the statistical characteristics of the sample population. RESULTS: A total of 375 patients were included in this study with documented pain responses and completed QOL questionnaires at 2 months. 9/14 items in the QLQ-C30 and 6/10 items in the BPI were found to have moderate or better correlation with the anchor. For deterioration, statistically significant MCID scores were found in all items of the QLQ-C30 and BPI. For improvement, statistically significant MCID scores were found in 7/9 items of the QLQ-C30 and 2/6 items of the BPI. The MCID scores for deterioration were uniformly higher than the MCIDs for improvement. Using the distribution-based method, there was good agreement between the 0.5 standard deviation (SD) values and anchor-based scores for deterioration. For improvement, there was less agreement and the anchor-based scores were lower than the 0.5 SD values obtained from the distribution-based method. CONCLUSION: We present MCID scores for the QLQ-C30 and BPI instruments obtained from a large cohort of patients with advanced cancer undergoing re-irradiation for painful bone metastases. The results from this study were compared to other similar studies which showed larger MCID scores for improvement compared to deterioration. We hypothesize that disease trajectory and patient expectations are important factors in understanding the contrasting results. The results of this study can guide clinicians and researchers in the interpretation of these instruments.