Using the Behavior Change Wheel to Identify and Understand Key Facilitators and Barriers for Lifestyle Care for Postmenopausal Breast Cancer Survivors: A Delphi-Study.

BACKGROUND: Optimal approaches to promote sustained adherence to lifestyle and bodyweight recommendations in postmenopausal breast cancer (PMBC) survivors are lacking. PURPOSE: This Delphi-study aims to identify and understand expert-opinion on potential barriers and facilitators for promoting adherence to these lifestyle and bodyweight recommendations in (clinical) care for PMBC survivors, and to determine potential effective intervention strategies. METHODS: The expert panel consisted of oncology Health Care Professionals (HCPs) (N = 57), patient advocates (N = 5), and PMBC survivors (N = 38). They completed three questionnaires: Q1-idea generation; Q2-validation and prioritization; Q3-ranking. The Behavior Change Wheel was used as theoretical framework for analysis. Thematic analysis was applied to identify key overarching themes based on the top-ranked facilitators and barriers. Potential Behavior Change Techniques (BCTs) and intervention strategies were identified using the Behavior Change Technique Taxonomy version 1 and the Behavior Change Wheel. RESULTS: Eleven core categories of key barriers/facilitators for the promotion of adherence to recommendations for lifestyle and bodyweight among PMBC survivors were identified. For each core category, relevant BCTs and practical potential intervention strategies were selected based on suggestions from the expert panel. These included: increasing knowledge about the link between lifestyle and cancer; enabling self-monitoring of lifestyle behaviors followed by evaluation; offering group lifestyle counseling for PMBC survivors, enhancing social support for favorable lifestyle behaviors; and stimulating multidisciplinary collaboration among HCPs. CONCLUSIONS: Findings provide valuable insight for the development of interventions changing behavior of PMBC survivors and HCPs toward increased healthy lifestyle (support) behavior.

Optimal approaches to promote sustained adherence to lifestyle and bodyweight recommendations in postmenopausal breast cancer (PMBC) survivors are lacking. This Delphi-study aims to identify and understand expert-opinion on potential barriers and facilitators for promoting adherence to these lifestyle and bodyweight recommendations in (clinical) care for PMBC survivors, and to determine potential effective intervention strategies. The expert panel consisted of oncology Health Care Practitioners (HCPs) (N = 57), patient advocates (N = 5), and PMBC survivors (N = 38). They completed three questionnaires: Q1­idea generation; Q2­validation and prioritization; Q3­ranking. The Behavior Change Wheel was used as theoretical framework for analysis. Thematic analysis was applied to identify key overarching themes based on the top-ranked facilitators and barriers. Potential Behavior Change Techniques (BCTs) and intervention strategies were identified. Eleven core categories of key barriers/facilitators for the promotion of adherence to recommendations for lifestyle and bodyweight among PMBC survivors were identified. For each core category, relevant BCTs and practical potential intervention strategies were selected based on suggestions from the expert panel. These included: increasing knowledge about the link between lifestyle and cancer; enabling self-monitoring of lifestyle behaviors followed by evaluation; offering group lifestyle counseling for PMBC survivors, enhancing social support for favorable lifestyle behaviors; and stimulating multidisciplinary collaboration among HCPs.

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.

Potentially inappropriate end-of-life care and its association with relatives' well-being: a systematic review.

PURPOSE: Potentially inappropriate end-of-life cancer care (e.g., frequent hospital admission and emergency room visits in the last month of life) is known to be associated with a poorer quality of life of patients, but research on its association with the well-being of relatives is scarce. The aim of this systematic literature review was to evaluate the association between potentially inappropriate end-of-life cancer care and relatives' well-being. METHODS: We conducted a systematic search and review, and reported according to the PRISMA guideline, on the association between potentially inappropriate end-of-life cancer care and well-being of relatives before and after the death of their loved one. Pubmed, PsycInfo, Embase, and CINAHL were searched for studies published from January 2000 to July 2022. Studies' quality was assessed using the Critical Appraisal Checklists from the Joanne Briggs Institute (JBI). RESULTS: We identified eight studies including 10,062 relatives (59-79% female, mean age 46-61 years, 29-72% partner). Potentially inappropriate end-of-life cancer care was associated with poorer well-being of relatives including lower quality of life, higher burden of depressive symptoms, more regret, and more feelings of unpreparedness for the patient's death. CONCLUSION: Potentially inappropriate cancer care at the end-of-life is associated with poorer well-being of relatives before and after the death of their loved one. This emphasizes the importance of avoiding potentially inappropriate end-of-life cancer care, as it is both associated with poorer outcomes for relatives and patients. However, the number of studies examining this association is small, and more research is needed in this area.

Course of objectively measured physical activity and sleep in postmenopausal breast cancer survivors during the COVID-19 pandemic: A 1-year follow-up.

BACKGROUND: As physical inactivity and poor sleep quality may impose additional risk for cancer recurrence and overall mortality in postmenopausal breast cancer (PMBC) survivors, it is important to gain insight into the effect of the COVID-19 pandemic on their physical activity (PA) and sleep level. OBJECTIVE: This study aimed to assess the course of their physical activity (PA) and sleep throughout governmental measures against COVID-19 during 12 months of the COVID-19 pandemic. METHODS: PMBC survivors (n = 96) wore an ActiGraph wGT3X-BT for seven consecutive days at 12 and 18 months after diagnosis and additional measurements were taken after onset of the second (partial) COVID-19 lockdown. Longitudinal data was categorized into four timepoints: before onset of COVID-19 (T1), during the initial lockdown (T2), in between initial and second lockdown (T3), and during the second lockdown (T4). General linear mixed effects models assessed differences in moderate-to-vigorous physical activity (MVPA) per day, total minutes of PA per day, average acceleration, intensity gradient, sleep efficiency, and sleep duration over time. RESULTS: Levels of MVPA per day before COVID-19 were low (Median = 20.9 min/day (IQR = 10.8;36.2)), and time spent physically active was most often in light intensity, which remained stable throughout the pandemic. Sleep duration (Median = 442.8 min/night (IQR = 418.3;478.0)) and efficiency (85.9% (IQR = 79.6;88.4)) was sufficient before COVID-19 and showed stability over time. CONCLUSIONS: Low levels of PA with mostly light intensity, and adequate sleep efficiency and duration were observed before COVID in PMBC survivors. This was not further affected by COVID-19 governmental measures.

Association between pretreatment emotional distress and neoadjuvant immune checkpoint blockade response in melanoma.

Neoadjuvant immune checkpoint blockade (ICB) outperforms adjuvant ICB for treatment of stage IIIB-D melanoma, but potential biomarkers of response, such as interferon-gamma (IFNγ) signature and tumor mutational burden (TMB), are insufficient. Preclinical studies suggest that emotional distress (ED) can negatively affect antitumor immune responses via ß-adrenergic or glucocorticoid signaling. We performed a post hoc analysis evaluating the association between pretreatment ED and clinical responses after neoadjuvant ICB treatment in patients with stage IIIB-D melanoma in the phase 2 PRADO trial ( NCT02977052 ). The European Organisation for Research and Treatment of Cancer scale for emotional functioning was used to identify patients with ED (n = 28) versus those without (n = 60). Pretreatment ED was significantly associated with reduced major pathologic responses (46% versus 65%, adjusted odds ratio 0.20, P = 0.038) after adjusting for IFNγ signature and TMB, reduced 2-year relapse-free survival (74% versus 91%, adjusted hazard ratio 3.81, P = 0.034) and reduced 2-year distant metastasis-free survival (78% versus 95%, adjusted hazard ratio 4.33, P = 0.040) after adjusting for IFNγ signature. RNA sequencing analyses of baseline patient samples could not identify clear ß-adrenergic- or glucocorticoid-driven mechanisms associated with these reduced outcomes. Pretreatment ED may be a marker associated with clinical responses after neoadjuvant ICB in melanoma and warrants further investigation. ClinicalTrials.gov registration: NCT02977052 .

Health-related quality of life after stereotactic radiosurgery in patients with brain metastases.

PURPOSE: This study aimed to assess health-related quality of life (HRQoL) in patients with brain metastases treated with stereotactic radiosurgery (SRS) and to identify factors associated with this. METHODS: HRQoL was measured pre-SRS, at 3- and 6-month follow-up. Physical functioning, cognitive functioning, role functioning, and fatigue were analyzed with the EORTC QLQ-C30 questionnaire. Motor dysfunction, future uncertainty, visual disorder, communication deficit, and headaches were analyzed with the EORTC QLQ-BN20. Clinically important symptom or functional impairment was assessed following set thresholds. Factors associated with impairment were identified through multivariable logistic regression analyses. RESULTS: At baseline, 178 patients were included; 54% (n=96) completed questionnaires at 3 months and 39% (n=70) at 6 months. Before SRS, 29% of linear accelerator (LINAC) patients reported physical and cognitive impairment, while 25% reported impairment for fatigue. At 6 months, 39%, 43%, and 57% of LINAC patients reported impairment respectively. Forty-five percent of Gamma Knife (GK) patients reported impairment pre-SRS for physical, cognitive functioning, and fatigue. At 6 months, 48%, 43%, and 33% of GK patients reported impairment respectively. Except for role functioning, pre-SRS symptom and functioning scores were associated with impairment at 3 months, whereas scores at 3 months were associated with impairment at 6 months. Age, gender, systemic therapy, and intracranial progression were not associated with clinically important impairment. CONCLUSION: As 33-57% of patients with brain metastases reported symptom burden and functional impairments that were of clinical importance, it is recommended to pay attention to the HRQoL outcomes of these patients during clinical encounters.

Patient-Reported Outcome Measures to Improve the Care Continuum for Patients With Metastatic Breast Cancer: Opportunities and Implications for Nursing Practice.

OBJECTIVES: Albeit treatable, metastatic breast cancer (MBC) remains incurable. To achieve remaining life years lived well, extended survival should be balanced with optimal health-related quality of life (HRQoL) and timely initiated supportive, palliative, and end-of-life care. The Advanced Breast Cancer (ABC) Global Alliance identified 10 urgent and actionable goals for the decade between 2015 and 2025 to achieve substantial improvement in the lives of patients living with ABC, including MBC. Enhancements are needed for HRQoL, research, quality of care, and survival. We explore the potential of patient-reported outcome measures (PROMs) in addressing these gaps and aim to describe opportunities and current initiatives for improving the MBC care continuum through PROMs. DATA SOURCES: Narrative description of recent literature on MBC and PROMs. CONCLUSION: We believe PROMs can make valuable contributions to seven of the 10 goals described: 1) enhancing the understanding of MBC through high-quality data collection, 2) improving HRQoL and raising consideration of survival versus HRQoL, 2) prolonging survival, 4) increasing referral to nonclinical support services, 5) supporting patient-healthcare provider communication, 6) encouraging improvements in healthcare access, and 7) supporting meeting patients' informational needs. IMPLICATIONS FOR NURSING PRACTICE: Maximizing the benefits of PROMs requires effective implementation. Because nurses and nurse practitioners are at the forefront of care, they can offer a comprehensive understanding of patients' needs and play a crucial role in facilitating the integration of PROMs into routine care for MBC patients and ultimately optimizing patients' outcomes and life years and months left.

An eHealth App (CAPABLE) Providing Symptom Monitoring, Well-Being Interventions, and Educational Material for Patients With Melanoma Treated With Immune Checkpoint Inhibitors: Protocol for an Exploratory Intervention Trial.

BACKGROUND: Since treatment with immune checkpoint inhibitors (ICIs) is becoming standard therapy for patients with high-risk and advanced melanoma, an increasing number of patients experience treatment-related adverse events such as fatigue. Until now, studies have demonstrated the benefits of using eHealth tools to provide either symptom monitoring or interventions to reduce treatment-related symptoms such as fatigue. However, an eHealth tool that facilitates the combination of both symptom monitoring and symptom management in patients with melanoma treated with ICIs is still needed. OBJECTIVE: In this pilot study, we will explore the use of the CAPABLE (Cancer Patients Better Life Experience) app in providing symptom monitoring, education, and well-being interventions on health-related quality of life (HRQoL) outcomes such as fatigue and physical functioning, as well as patients' acceptance and usability of using CAPABLE. METHODS: This prospective, exploratory pilot study will examine changes in fatigue over time in 36 patients with stage III or IV melanoma during treatment with ICI using CAPABLE (a smartphone app and multisensory smartwatch). This cohort will be compared to a prospectively collected cohort of patients with melanoma treated with standard ICI therapy. CAPABLE will be used for a minimum of 3 and a maximum of 6 months. The primary endpoint in this study is the change in fatigue between baseline and 3 and 6 months after the start of treatment. Secondary end points include HRQoL outcomes, usability, and feasibility parameters. RESULTS: Study inclusion started in April 2023 and is currently ongoing. CONCLUSIONS: This pilot study will explore the effect, usability, and feasibility of CAPABLE in patients with melanoma during treatment with ICI. Adding the CAPABLE system to active treatment is hypothesized to decrease fatigue in patients with high-risk and advanced melanoma during treatment with ICIs compared to a control group receiving standard care. The Medical Ethics Committee NedMec (Amsterdam, The Netherlands) granted ethical approval for this study (reference number 22-981/NL81970.000.22). TRIAL REGISTRATION: ClinicalTrials.gov NCT05827289; https://clinicaltrials.gov/study/NCT05827289. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/49252.

Trajectories of emotional functioning and experienced care of relatives in the last year of life of patients with advanced cancer: A longitudinal analysis of the eQuiPe study.

OBJECTIVE: Advanced cancer has a major impact on both patients and their relatives. To allow for personalized support, it is important to recognize which relatives will experience a decline in emotional functioning during the patient's last year of life, when this decline will occur, and what factors are associated with it. This study aimed to examine the trajectory of emotional functioning of relatives during that time and the characteristics associated with changes in this trajectory. METHODS: A prospective, longitudinal, multicenter, observational study in patients with advanced cancer and their relatives was conducted (eQuiPe). We analyzed relatives' changes in emotional functioning in the patient's last year using the EORTC QLQ-C30 and assessed associations with sociodemographic and care characteristics using multivariable mixed-effects analysis. RESULTS: 409 relatives completed ≥1 questionnaires during the patient's last year of life. Mean age was 64 years, 61% were female and 75% were the patient's partner. During this year, mean emotional functioning declined significantly over time from 73.9 to 64.6 (p = 0.023, effect size = 0.43). The type of relationship between relatives and patients (p = 0.002), patient' sleep problems (p = 0.033), and continuity of care (p = 0.002) were significantly associated with changes in emotional functioning. CONCLUSIONS: Relatives' emotional functioning declined during the patient's last year of life. Support for them, especially partners and relatives of patients with sleep problems, is important. Relatives who experienced more continuity of care had a less steep decline in emotional functioning.

The course of self-perceived cognitive functioning among patients with lymphoma and the co-occurrence with fatigue and psychological distress.

PURPOSE: To investigate the proportion of patients with lymphoma with persistent clinically relevant cognitive impairment, and its relation to  treatment, fatigue, and psychological distress. METHODS: Patients with diffuse-large-B-cell-lymphoma (DLBCL), follicular-lymphoma (FL), and chronic-lymphocytic-leukemia (CLL)/small-lymphocytic-lymphoma (SLL), diagnosed between 2004-2010 or 2015-2019, were followed up to 8 years post-diagnosis. Sociodemographic and clinical data were obtained from the Netherlands Cancer Registry and the Population-based HAematological Registry for Observational Studies. The EORTC QLQ-C30 was used to assess cognitive functioning and fatigue, and the HADS to assess psychological distress. Individual growth curve models were performed. Results were compared with an age- and sex-matched normative population. RESULTS: A total of 924 patients were included (70% response rate). Persistent cognitive impairment was twice as high in patients (30%) compared to the normative population (15%). Additionally, 74% of patients reported co-occurring symptoms of persistent fatigue and/or psychological distress. Patients with FL (- 23 points, p < 0.001) and CLL/SLL (- 10 points, p < 0.05) reported clinically relevant deterioration of cognitive functioning, as did the normative population (FLnorm - 5 points, DLBCLnorm - 4 points, both p < 0.05). Younger age, higher fatigue, and/or psychological distress at inclusion were associated with worse cognitive functioning (all p's < 0.01). Treatment appeared less relevant. CONCLUSION: Almost one-third of patients with lymphoma report persistent cognitive impairment, remaining present up to 8 years post-diagnosis. Early onset and co-occurrence of symptoms highlight the need for clinicians to discuss symptoms with patients early. IMPLICATIONS FOR CANCER SURVIVORS: Early recognition of cognitive impairment could increase timely referral to suitable supportive care (i.e., lifestyle interventions) and reduce (long-term) symptom burden.

Health-related quality of life of Adolescent and Young Adult Cancer Survivors before and during the COVID-19 pandemic: longitudinal improvements on social functioning and fatigue.

The health-related quality of life (HRQoL) among long-term Adolescent and Young Adult Cancer Survivors (AYACS) and an age- and sex-matched normative population was examined. Although the HRQoL of AYACS was worse compared to the normative population before and during the COVID-19 pandemic, the scores of AYACS improved over time in contrast to the normative population. Presumably, AYACS are used to adjusting their lives to stressful life events. Furthermore, the lockdown may have been beneficial for AYACS who face difficulties fully participating in society due to the impact of cancer. AYACS who encounter HRQoL issues could benefit from support interventions to empower them and build resilience.

Adherence to Patient-Reported Symptom Monitoring and Subsequent Clinical Interventions for Patients With Multiple Myeloma in Outpatient Care: Longitudinal Observational Study.

BACKGROUND: The use of software to monitor patient-reported outcome measures (PROMs) can improve outcomes for patients with cancer receiving anticancer therapy; however, evidence from applications used in routine clinical practice is lacking. OBJECTIVE: We aimed to investigate adherence to and patient perceptions of a weekly, web-based PROM symptom monitoring program in routine clinical practice for patients with Multiple Myeloma. Moreover, we aimed to capture how clinical alerts prompted by the system influenced clinical care. METHODS: We conducted a single-center longitudinal observational study to evaluate patient adherence to and perceptions of the PROM monitoring software in routine practice. Patients with Multiple Myeloma remotely completed weekly treatment-specific PROMs to monitor key symptoms via a dedicated web-based platform. Alarming symptoms triggered clinical alerts in the application for the treatment team, which could initiate clinical interventions. The primary outcomes were the web-based assessment completion rate and patients' perceptions of the monitoring program, as assessed by an evaluation questionnaire. Moreover, clinical alerts prompted by the system and consequential clinical interventions were analyzed. RESULTS: Between July 2021 and June 2022, a total of 55 patients were approached for participation; 39 patients participated (24, 61% male, mean age 63.2, SD 9.2 years). The median assessment completion rate out of all weekly scheduled assessments was 70.3% (IQR 41.2%-89.6%). Most patients (77%) felt that the health care team was better informed about their health status due to the web-based assessments. Clinical alerts were triggered for 1758 of 14,639 (12%) reported symptoms. For 548 of 1758 (31.2%) alerts, the symptom had been registered before and no further action was required; for 348 of 1758 (19.9%) alerts, telephone consultation and self-management advice sufficed. Higher-level interventions were seldom needed in response to alerts: referral to a doctor or specialist (88/1758, 5% alerts), medication changes (22/1758, 1.3%), scheduling additional diagnostics (9/1758, 0.5%), or unplanned emergency visits (7/1758, 0.4%). Most patients (55%) reported the calls in response to alerts gave them "quite a bit" or "very much" of an added feeling of security during therapy. CONCLUSIONS: Our study shows that high adherence to regular and tailored PROM monitoring can be achieved in routine clinical care. The findings provide valuable insight into how the PROM monitoring program and the clinical alerts and resulting interventions shaped clinical practice. TRIAL REGISTRATION: ClinicalTrials.gov NCT05036863; https://clinicaltrials.gov/study/NCT05036863.

Monitoring aerobic capacity in cancer survivors using self-reported questionnaires: criterion validity and responsiveness.

BACKGROUND: Evaluating the criterion validity and responsiveness of the self-reported FitMáx©-questionnaire, Duke Activity Status Index (DASI) and Veterans Specific Activity Questionnaire (VSAQ) to monitor aerobic capacity in cancer survivors. METHODS: Cancer survivors participating in a 10-week supervised exercise program were included. The FitMáx©-questionnaire, DASI, VSAQ and a cardiopulmonary exercise test (CPET) were completed before (T0) and after (T1) the program. Intraclass correlation coefficients (ICC) were calculated between VO2peak estimated by the questionnaires (questionnaire-VO2peak) and VO2peak measured during CPET (CPET-VO2peak), at T0 to examine criterion validity, and between changes in questionnaire-VO2peak and CPET-VO2peak (ΔT0-T1) to determine responsiveness. Receiver operating characteristic (ROC) analyses were performed to examine the ability of the questionnaires to detect true improvements (≥ 6%) in CPET-VO2peak. RESULTS: Seventy participants were included. Outcomes at T1 were available for 58 participants (83%). Mean CPET-VO2peak significantly improved at T1 (Δ1.6 mL·kg- 1·min- 1 or 8%). Agreement between questionnaire-VO2peak and CPET-VO2peak at T0 was moderate for the FitMáx©-questionnaire (ICC = 0.69) and VSAQ (ICC = 0.53), and poor for DASI (ICC = 0.36). Poor agreement was found between ΔCPET-VO2peak and Δquestionnaire-VO2peak for all questionnaires (ICC 0.43, 0.19 and 0.18 for the FitMáx©-questionnaire, VSAQ and DASI, respectively). ROC analysis showed that the FitMáx©-questionnaire was able to detect improvements in CPET-VO2peak (area under the curve, AUC = 0.77), when using a cut-off value of 1.0 mL·kg- 1·min- 1, while VSAQ (AUC = 0.66) and DASI (AUC = 0.64) could not. CONCLUSION: The self-reported FitMáx©-questionnaire has sufficient validity to estimate aerobic capacity in cancer survivors at group level. The responsiveness of the FitMáx©-questionnaire for absolute change is limited, but the questionnaire is able to detect whether aerobic capacity improved. The FitMáx©-questionnaire showed substantial better values of validity and responsiveness compared to DASI and VSAQ.

International validation of two EORTC questionnaires for assessment of health-related quality of life for patients with high-grade non-Hodgkin lymphoma (QLQ-NHL-HG29) and low-grade non-Hodgkin lymphoma (QLQ-NHL-LG20).

BACKGROUND: Health-related quality of life (HRQOL) is a critical aspect to consider when making treatment decisions for patients with non-Hodgkin-lymphoma (NHL). This international study by the European Organisation for Research and Treatment of Cancer (EORTC) tested the psychometric properties of two newly developed measures for patients with high-grade (HG)- and low-grade (LG)-NHL: the EORTC QLQ-NHL-HG29 and the EORTC QLQ-NHL-LG20 to supplement the core questionnaire (EORTC QLQ-C30). METHODS: Overall, 768 patients with HG-NHL (N = 423) and LG-NHL (N = 345) from 12 countries completed the QLQ-C30, QLQ-NHL-HG29/QLQ-NHL-LG20 and a debriefing questionnaire at baseline, and a subset at follow-up for either retest (N = 125/124) or responsiveness to change (RCA; N = 98/49). RESULTS: Confirmatory factor analysis showed an acceptable to good fit of the 29 items of the QLQ-NHL-HG29 on its five scales (symptom burden [SB], neuropathy, physical condition/fatigue [PF], emotional impact [EI], and worries about health/functioning [WH]), and of the 20 items of the QLQ-NHL-LG20 on its four scales (SB, PF, EI, and WH). Completion took on average 10 minutes. Test-retest reliability, convergent validity, known-group comparisons, and RCA find satisfactory results of both measures. A total of 31%-78% of patients with HG-NHL and 22%-73% of patients with LG-NHL reported symptoms and/or worries (e.g., tingling in hands/feet, lack of energy, and worries about recurrence). Patients reporting symptoms/worries had substantially lower HRQOL compared to those without. DISCUSSION: The use of the EORTC QLQ-NHL-HG29 and QLQ-NHL-LG20 questionnaires in clinical research and practice will provide clinically relevant data to better inform treatment decision-making. PLAIN LANGUAGE SUMMARY: The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group developed two questionnaires. These questionnaires measure health-related quality of life. The questionnaires are for patients with high-grade or low-grade non-Hodgkin lymphoma. They are called the EORTC QLQ-NHL-HG29 and QLQ-NHL-LG20. The questionnaires are now internationally validated. This study demonstrates that the questionnaires are reliably and valid, which are important aspects of a questionnaire. The questionnaires can now be used in clinical trials and practice. With the information gathered from the questionnaires, patients and clinicians can better evaluate treatments and discuss the best choice for a patient.

Common toxicities associated with immune checkpoint inhibitors and targeted therapy in the treatment of melanoma: A systematic scoping review.

INTRODUCTION: This systematic scoping review compares the toxicities experienced by patients receiving immune checkpoint inhibitors (ICIs) or targeted therapy (TT) for stage III (resected and unresectable) and stage IV melanoma. METHODS: OVID Medline, Embase, and PsycInfo were searched to identify Phase III trials reporting toxicities of FDA-approved ICIs and TT for advanced melanoma. AEs that were reported by ≥ 10% of patients in the evaluated trials were included. RESULTS: Toxicity profiles of 11208 patients from 24 studies were reviewed. The rate of AEs was lower with ICIs compared to TT. However, ICIs were associated with higher rates of long-term or permanent AEs compared to TT, where toxicities generally were shortterm and reversible with treatment discontinuation. CONCLUSION: The toxicity profiles of ICIs and TT vary substantially. Whilst the rate of AEs was lower with ICIs than during TT, it was also associated with higher rates of potentially chronic AEs.

Association between peripheral neuropathy and sleep quality among colorectal cancer patients from diagnosis until 2-year follow-up: results from the PROFILES registry.

PURPOSE: Studies on the association between peripheral neuropathy (PN) and patient-reported outcomes have mostly overlooked sleep quality. Therefore, we aimed to assess the association between PN and sleep quality in a population-based sample of colorectal cancer (CRC) patients up 2 years after diagnosis. METHODS: All newly diagnosed CRC patients from four Dutch hospitals were eligible for participation. Patients (N = 340) completed questionnaires about PN (EORTC QLQ-CIPN20) and sleep (PSQI) before initial treatment (baseline) and 1 and 2 years after diagnosis. RESULTS: Patients who developed sensory PN (n = 76) or motor PN (n = 79) after treatment more often reported poor sleeping scores (PSQI > 5) compared with those who did not develop SPN or MPN at 1-year (SPN: 38% vs. 261%, MPN: 37% vs. 14%) and 2-year follow-up (SPN: 38 vs. 23%, MPN: 37% vs. 18%) (all p < 0.05). Overall, results showed that among patients who did not develop SPN or MPN, sleep quality improved after baseline, while among patients with SPN or MPN, sleep quality did not improve at one and two years after diagnosis. CONCLUSIONS: Both SPN and MPN were significantly associated with the course of sleep quality among CRC patients up to 2 years after diagnosis. Clinicians should be encouraged to discuss sleep quality with their patients who either report PN or are at risk of developing PN. IMPLICATIONS FOR CANCER SURVIVORS: Improving sleep quality among survivors with PN is important, either by reducing PN symptoms or directly targeting sleep.

Phase III study of the European Organisation for Research and Treatment of Cancer Quality of Life cancer survivorship core questionnaire.

PURPOSE: The purpose of this study is to develop a European Organisation for Research and Treatment of Cancer Quality of Life Group (EORTC QLG) questionnaire that captures the full range of physical, mental, and social health-related quality of life (HRQOL) issues relevant to disease-free cancer survivors. In this phase III study, we pretested the provisional core questionnaire (QLQ-SURV111) and aimed to identify essential and optional scales. METHODS: We pretested the QLQ-SURV111 in 492 cancer survivors from 17 countries with one of 11 cancer diagnoses. We applied the EORTC QLG decision rules and employed factor analysis and item response theory (IRT) analysis to assess and, where necessary, modify the hypothesized questionnaire scales. We calculated correlations between the survivorship scales and the QLQ-C30 summary score and carried out a Delphi survey among healthcare professionals, patient representatives, and cancer researchers to distinguish between essential and optional scales. RESULTS: Fifty-four percent of the sample was male, mean age was 60 years, and, on average, time since completion of treatment was 3.8 years. Eleven items were excluded, resulting in the QLQ-SURV100, with 12 functional and 9 symptom scales, a symptom checklist, 4 single items, and 10 conditional items. The essential survivorship scales consist of 73 items. CONCLUSIONS: The QLQ-SURV100 has been developed to assess comprehensively the HRQOL of disease-free cancer survivors. It includes essential and optional scales and will be validated further in an international phase IV study. IMPLICATIONS FOR CANCER SURVIVORS: The availability of this questionnaire will facilitate a standardized and robust assessment of the HRQOL of disease-free cancer survivors.

Self-performed Five Times Sit-To-Stand test at home as (pre-)screening tool for frailty in cancer survivors: Reliability and agreement assessment.

AIMS AND OBJECTIVES: The self-performance of a Five-Times-Sit-To-Stand (FTSTS)-test, without the usual supervision by a medical professional, provides valuable opportunities for clinical practice and research. This study aimed: (1) to determine the validity of the self-performed FTSTS test in comparison to a supervised reference test and (2) to determine the reliability of a self-performed FTSTS test by cancer survivors. BACKGROUND: Early detection of frailty in cancer survivors may enable prehabilitation interventions before surgery or intensive treatment, improving cancer outcomes. DESIGN: A repeated measures reliability and agreement study, with one week in between measures, was performed. METHODS: Cancer survivors (n = 151) performed two FTSTS tests themselves. One additional reference FTSTS test was supervised by a physical therapist. The intraclass correlation coefficient (ICC), structural error of measurement (SEM) and minimally important clinical difference (MID) were calculated comparing a self-performed FTSTS test to the reference test, and comparing two self-performed FTSTS tests. The Guidelines for Reporting Reliability and Agreement Studies (GRASS) have been used. RESULTS: Mean age of cancer survivors was 65.6 years (SD = 9.3), 54.6% were female, median time since diagnosis was 2 years [IQR = 1], and tumour type varied (e.g., breast cancer (31.8%), prostate cancer (17.2%), gastrointestinal cancer (11.9%) and haematological cancer (11.9%)). Validity of the self-performed FTSTS test at home was acceptable in comparison with the reference test (ICC = .74; SEM = 3.2; MID = 3.6) as was the reliability of the self-performed FTSTS test (ICC = .70; SEM = 2.2; MID = 3.8). CONCLUSIONS: The self-performed FTSTS test is a valid and reliable measure to assess lower body function and has potential to be used as objective (pre-)screening tool for frailty in cancer survivors. RELEVANCE TO CLINICAL PRACTICE: The self-performed FTSTS test at home may indicate the cancer survivors in need of prehabilitation in advance of surgery or intensive treatment. The feasibility, short amount of time needed and potential cost-effectiveness of the self-performed FTSTS test can make it a valuable contribution to personalised care and precision medicine.

[How long are medical oncology patients in The Netherlands willing to travel for their cancer care?] / Hoe lang zijn patiënten bereid te reizen voor medisch-oncologische zorg?

BACKGROUND: The number of people with cancer will increase in the Netherlands. Further concentration and network care is pursued. The aim of this study was to explore how long medical oncology patients are willing to travel for their cancer care. METHOD: A flashmob study into patients' willingness to travel for cancer care was conducted in 65 Dutch hospitals. Patients completed a questionnaire about willingness to travel and any experienced issues with traveling. RESULTS: A total of 4337 medical oncology patients completed the questionnaire. Of the patients, 20% were willing to travel more than 1 hour (one-way) for their current treatment, and more willing to travel for treatment in a hospital more experienced in their specific type of cancer (44% more than 1 hour). Willingness to travel longer was higher among patientsagedv40 years or younger, those with higher education, with better physical functioning and with a rare cancer. Willingness to travel longer was lowest among patients aged 75 or older. Approximately 30% of all patients experienced issues with traveling, especially those with comorbidities or with decreased physical functioning. CONCLUSION: In this flashmob study, 15% of patients were willing to travel up to 30 minutes (one-way) and 44% more than 1 hour for treatment and follow-up in a hospital more experienced in their specific type of cancer. Patients aged 75 years or older were less willing to travel longer. Thirty percent of patients experienced issues with travelling. It is important to take this into account in the future organization of cancer care.

Neurocognitive functioning after Gamma Knife and LINAC stereotactic radiosurgery in patients with brain metastases.

PURPOSE: Brain metastases (BM) themselves and treatment with stereotactic radiosurgery (SRS) can influence neurocognitive functioning. This prospective study aimed to assess neurocognitive decline in patients with BM after SRS. METHODS: A neuropsychological test battery was assessed yielding ten test outcomes. Neurocognitive decline at 3 and 6 months post SRS was compared to measurement prior to Gamma Knife (GK) or linear accelerator (LINAC) SRS. Reliable change indices with correction for practice effects were calculated to determine the percentage of neurocognitive decline (defined as decline on ≥ 2 test outcomes). Risk factors of neurocognitive decline were analyzed with binary logistic regression. RESULTS: Of 194 patients pre-SRS, 40 GK and 29 LINAC patients had data accessible at 6 months. Compared to baseline, 38% of GK patients declined at 3 months, and 23% declined at 6 months. GK patients declined on attention, executive functioning, verbal memory, and fine motor skill. Of LINAC patients, 10% declined at 3 months, and 24% at 6 months. LINAC patients declined on executive functioning, verbal memory, and fine motor skills. Risk factors of neurocognitive decline at 3 months were high age, low education level and type of SRS (GK or LINAC). At 6 months, high age was a risk factor. Karnofsky Performance Scale, BM volume, number of BM, tumor progression and neurocognitive impairment pre-SRS were no risk factors. CONCLUSION: Neurocognitive decline occurs in a considerable proportion of patients with BM treated with GK or LINAC SRS. Overall, high age appears to be a risk factor for neurocognitive decline after SRS.