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OBJECTIVES: To identify subgroups of patients with distinct psychological profiles at the beginning of the COVID-19 pandemic and evaluate for differences. SAMPLE & SETTING: Online survey of patients with cancer during the COVID-19 pandemic. METHODS & VARIABLES: Patients completed measures of demographic and clinical characteristics, as well as cancer- and COVID-19-related stress, global stress, social isolation, loneliness, financial toxicity, and common symptoms. Latent profile analysis was used to identify distinct psychological profiles. RESULTS: Among 1,145 patients, three subgroups were identified (i.e., no anxiety or depression and normative level of resilience; high depression, high anxiety, and low resilience; and very high depression, very high anxiety, and very low resilience). Patients with the two worst psychological profiles were younger, more likely to be female, more recently diagnosed with cancer, and more likely to have breast cancer. IMPLICATIONS FOR NURSING: Findings may assist clinicians to identify patients at increased risk for significant psychological morbidity and provide more timely, targeted, and cost-effective interventions. [ABSTRACT FROM AUTHOR]

Background: Experience‐Based Co‐Design (EBCD) is a multi‐stage participatory action research process which was developed originally to increase patient involvement in service improvement initiatives. This viewpoint article serves as a reflection on the researchers' experiences, focusing on the application and feasibility of participatory approaches, particularly co‐design, in the specific context of early‐phase clinical trials. Methods: We reflect on the opportunities and challenges of applying EBCD in a new context of early‐phase clinical trials in oncology where experimental treatments are increasingly perceived as a therapeutic option and, in certain instances, their efficacy may lead to accelerated approval facilitating a swifter integration into standard care. Results: We propose that the opportunity of applying EBCD in such trials lies in improving the delivery of person‐centered care, care coordination, and support during the transition from experimental to standard care. Three potential challenges when applying EBCD in early‐phase clinical trials are discussed related to: the need for standardization in trial processes; planning EBCD in a context of high uncertainty; and vulnerability of patient populations. Conclusion: Integrating EBCD into early‐phase oncology trials presents an opportunity to enhance person‐centered care and can lead to simultaneous improvements in care processes and therapeutic development. Patient or Public Contribution: This article has been developed with the collaboration of a patient partner who serves on the advisory board of our ongoing EBCD study in early clinical trials. [ABSTRACT FROM AUTHOR]

Background. During the COVID-19 pandemic, people affected by cancer were in need of information about the virus and about the (self-) management of cancer symptoms and treatment. It is important to understand how patients with cancer navigated through the pandemic and to explore their experience relating to their supportive care needs. Aim. This study aimed to describe the experience of Swiss oncological patients during the COVID-19 pandemic with additional supportive cancer care. Methods. A single-center study was conducted in 2021. Patients with melanoma, breast, lung, or colon cancer who received active systemic anticancer treatment at the time of the COVID-19 pandemic and who were additionally seeing either oncology clinical nurse specialists, integrative medicine physicians, or both were included. We conducted semistructured interviews alongside the patient-reported quantitative assessment of distress and resilience. Thematic analysis was performed for the qualitative data and descriptive statistics for the quantitative data. Results. Eighteen patients with cancer were interviewed. Patients seeing an integrative medicine physician highlighted that they positively felt being addressed as a whole person during the consultations. The oncology clinical nurse specialists were perceived as the first point of contact for the patients and had more time during the pandemic compared to what the patients normally received. In general, patients did not experience delays or disruptions in their cancer treatment. As immunosuppressed and fatigued patients with cancer, they felt supported by the restrictions and hygienic measures. Access to vaccination reassured patients against the risk of infection. These results were reflected in the quantitative data, as we found moderate distress levels (M = 4.1; SD = 2.5) and high resilience scores (M = 7.5; SD = 0.9) in this patient population. Conclusion. During the COVID-19 pandemic, patients with cancer felt particularly supported by integrative medicine and cancer nurse consultations. Secured resources for nursing consultations and integrative medicine services can help to address the supportive care needs of patients with cancer. [ABSTRACT FROM AUTHOR]

Introduction: Patient and public involvement (PPI) in research emphasizes the importance of doing research with, rather than for people with lived health/illness experience(s). The purpose of this scoping review is to investigate the breadth and depth of scientific literature on PPI in cancer research and to identify how is PPI applied and reported in cancer research. Methods: We searched MEDLINE, Embase, CINAHL, and PsycInfo up to March 2022. All titles/abstracts and full‐text results were screened by two reviewers. Data were analyzed and are presented in both narrative and tabular format. Results: We screened 22,009 titles/abstract, reviewed 375 full‐text articles, of which 101 studies were included in this review. 66 papers applied PPI; 35 used co‐design methodologies. PPI in cancer research in published research has increased steadily since 2015 and often includes those with a past diagnosis of cancer or relatives/informal caregivers. The most common applied methods were workshops or interviews. PPI was generally used at the level of consultation/advisor and occurred mainly in early stages of research. Costs related to PPI were mentioned in 25 papers and four papers described training provided for PPI. Conclusions: Results of our review demonstrate the nature and extent of PPI expansion in cancer research. Researchers and research organizations entering the fray of PPI should consider planning and reporting elements such as the stage, level, and role type of PPI, as well as methods and strategies put in place to assure diversity. Furthermore, a thorough evaluation of whether all these elements meet the stated PPI purpose will help to grasp its impact on research outcomes. Patient or Public Contribution: Two patients participated in the stakeholder consultation as part of the scoping review methodology, contributed to the discussion on refining the results, and critically reviewed the manuscript. Both are co‐authors of this manuscript. [ABSTRACT FROM AUTHOR]

Objectives: The objectives were to describe patients' experiences of cancer care in Switzerland and explore the variation of these experiences by type of cancer. Methods: The Swiss Cancer Patient Experiences (SCAPE) study was a cross‐sectional, multicentre survey conducted in 2018. Adult patients (n = 7145) with breast, prostate, lung, colorectal, skin or haematological cancer from four large hospitals in French‐speaking Switzerland were invited to complete a survey. Logistic regressions were used to assess whether experiences varied according to cancer type, adjusting for confounders. Results: Of the 3121 persons who returned the survey (44% response rate), 2755 reporting an eligible cancer were included in the analyses. Participants' average score for overall care was 8.5 out of a maximum score of 10. Higher rates of positive experiences were found for nurse consultations (94%), diagnostic tests (85%) and inpatient care (82%). Lower positive responses were reported for support for people with cancer (70%), treatment decisions (66%), diagnosis (65%) and home care (55%). We observed non‐systematic differences in experiences of care by cancer type. Conclusions: This large study identified that cancer patient experiences can be improved in relation to communication, information and supportive care aspects. Improvement efforts should target these areas of care to enhance responsiveness of cancer care. [ABSTRACT FROM AUTHOR]

Immune-related adverse events (IrAEs) associated with the use of immune checkpoint inhibitors (ICIs) may not be fully covered by existing measures like the PRO-CTCAE™. Selecting PRO-CTCAE™ items for monitoring symptomatic adverse events is hindered by the heterogeneity and complexity of IrAEs, and no standardised selection process exists. We aimed to reach expert consensus on the PRO-CTCAE™ symptom terms relevant for cancer patients receiving ICIs and to gather preliminary expert opinions about additional symptom terms reflecting ICI symptomatic toxicities. Additionally, we gathered expert consensus about a core set of priority symptom terms for prospective surveillance and monitoring. This Delphi study involved an international panel of experts (n = 6 physicians; n = 3 nurses, n = 1 psychiatrist and n = 1 patient advocates). Experts prioritised the relevance and importance of symptom terms to monitor in patients treated with ICIs. Experts reached a consensus on the relevance of all (n = 80) PRO-CTCAE™ Symptom Terms. Consensus on the importance of these symptom terms for prospective monitoring in patients receiving ICIs was reached for 81% (n = 65) of these terms. Additional symptoms terms (n = 56) were identified, with a consensus that 84% (47/56) of these additional symptom terms should also be considered when monitoring symptomatic IrAEs. This study identified a prioritised list of symptom terms for prospective surveillance for symptomatic IrAEs in patients receiving ICI treatment. Our results indicate the need to strengthen the validity of PRO measures used to monitor patients receiving ICIs. While these results provided some support for the content validity of the PRO CTCAE™ and resulted in a preliminary set of salient symptomatic adverse events related to the use of ICIs, broader international agreement and patient involvement are needed to further validate our initial findings. • Current PRO-CTCAE™ library does not appear to cover the full spectrum of IrAEs. • This Delphi prioritised PRO-CTCAE™ terms to address symptomatic IrAEs. • Additional 56 new terms were suggested to form the expansion of the current library. • Further is needed to guide how ICI toxicity can be approached with PROs. [ABSTRACT FROM AUTHOR]

Delivering optimal cancer care to children, adolescents and adults with ASD has recently become a healthcare priority and represents a major challenge for all providers involved. In this review, and after consideration of the available evidence, we concisely deliver key information on this heterogenous group of neurodevelopmental disorders, as well as recommendations and concrete tools for the enhanced oncological care of this vulnerable population of patients. [ABSTRACT FROM AUTHOR]

T-cell acute lymphoblastic leukemia (T-ALL) is an aggressive hematological disease in which multiple genetic abnormalities cooperate in the malignant transformation of T-lymphoid progenitors. Although in pediatric T-ALL, CDKN1B deletions occur in about 12% of the cases and represent one of the most frequent copy number alterations, neither their association with other genetic alterations nor the clinical characteristics of these patients have been determined yet. In this study, we show that loss of CDKN1B increased the prevalence of cell cycle regulator defects in immature T-ALL, usually only ascribed to CDKN2A/B deletions, and that CDKN1B deletions frequently coincide with expression of MEF2C, considered as one of the driving oncogenes in immature early T-cell precursor (ETP) ALL. However, MEF2C-dysregulation was only partially associated with the immunophenotypic characteristics used to define ETP-ALL. Furthermore, MEF2C expression levels were significantly associated with or may even be predictive of the response to glucocorticoid treatment. [ABSTRACT FROM AUTHOR]

A letter to the editor is presented related to the article that studies NOTCH1 gene insertion mutations in T-cell acute lymphoblastic leukemia.

Simple Summary: During radiotherapy, many patients with head and neck cancer (HNC) experience distressing symptoms that might impact their health-related quality of life (HRQoL) and their ability to cope with the treatment. The objective of this study was to analyze the implementation of nurse-led consultation and the potential associations with symptom burden in HNC patients. Our study included 134 patients, of whom 72 received routine care and 62 received nurse-led consultations. The study was conducted at Lausanne University Hospital between 2017 and 2019. A larger proportion of patients in the routine care group reported severe symptoms; however, no relevant differences in main symptom burden over time were observed between the two groups. Nurse-led consultation has not yet been fully implemented and might be further investigated, involving larger populations, a more detailed process evaluation of the implementation, and the evaluation of the long-term impact of the intervention. Background: Head and neck cancer (HNC) patients experience distressing symptoms that can significantly impact their health-related quality of life (HRQoL). We analyzed the implementation of a nurse-led consultation (NLC) and explored potential associations with symptom burden in HNC patients. Methods: We retrospectively analyzed routinely collected data to describe the implementation of the nurse-led interventions and the evolution of the M.D. Anderson Symptom Inventory scores as patient-reported outcome measures (PROMs). Patients who received routine care (n = 72) were compared with patients in the NLC group (n = 62) at a radiation oncology unit between 2017 and 2019. PROMs were measured at T0 (between simulation and the first week of radiotherapy), T1 (week 3–4), and T2 (week 5–6). Results: Screening for nutrition, smoking, oral cavity status, and capacity for swallowing/chewing, but not for pain, was applied in >80% of patients in the NLC group from T0 to T1. Education (16%) and care coordination (7%) were implemented to a lesser extent. Symptom burden increased over time with no significant differences between groups. Conclusions: The nurse-led consultation was not associated with symptom burden over time. A larger implementation study including a detailed process evaluation, larger sample size, and a focus on long-term effects is needed. [ABSTRACT FROM AUTHOR]

Background: Management of severe symptomatic immune-related adverse events (IrAEs) related to immune checkpoint inhibitors (ICIs) can be facilitated by timely detection. As patients face a heterogeneous set of symptoms outside the clinical setting, remotely monitoring and assessing symptoms by using patient-reported outcomes (PROs) may result in shorter delays between symptom onset and clinician detection., Objective: We assess the effect of a model of care for remote patient monitoring and symptom management based on PRO data on the time to detection of symptomatic IrAEs from symptom onset. The secondary objectives are to assess its effects on the time between symptomatic IrAE detection and intervention, IrAE grade (severity), health-related quality of life, self-efficacy, and overall survival at 6 months., Methods: For this study, 198 patients with cancer receiving systemic treatment comprising ICIs exclusively will be recruited from 2 Swiss university hospitals. Patients are randomized (1:1) to a digital model of care (intervention) or usual care (control group). Patients are enrolled for 6 months, and they use an electronic app to complete weekly Functional Assessment of Cancer Therapy-General questionnaire and PROMIS (PROs Measurement Information System) Self-Efficacy to Manage Symptoms questionnaires. The intervention patient group completes a standard set of 37 items in a weekly PROs version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) questionnaire, and active symptoms are reassessed daily for the first 3 months by using a modified 24-hour recall period. Patients can add items from the full PRO-CTCAE item library to their questionnaire. Nurses call patients in the event of new or worsening symptoms and manage them by using a standardized triage algorithm based on the United Kingdom Oncology Nursing Society 24-hour triage tool. This algorithm provides guidance on deciding if patients should receive in-person care, if monitoring should be increased, or if self-management education should be reinforced., Results: The Institut Suisse de Recherche Expérimentale sur le Cancer Foundation and Kaiku Health Ltd funded this study. Active recruitment began since November 2021 and is projected to conclude in November 2023. Trial results are expected to be published in the first quarter of 2024 and will be disseminated through publications submitted at international scientific conferences., Conclusions: This trial is among the first trials to use PRO data to directly influence routine care of patients treated with ICIs and addresses some limitations in previous studies. This trial collects a wider spectrum of self-reported symptom data daily. There are some methodological limitations brought by changes in evolving treatment standards for patients with cancer. This trial's results could entail further academic discussions on the challenges of diagnosing and managing symptoms associated with treatment remotely by providing further insights into the burden symptoms represent to patients and highlight the complexity of care procedures involved in managing symptomatic IrAEs., Trial Registration: ClinicalTrials.gov NCT05530187; https://www.clinicaltrials.gov/study/NCT05530187., International Registered Report Identifier (irrid): DERR1-10.2196/48386., (©André Manuel da Silva Lopes, Sara Colomer-Lahiguera, Célia Darnac, Stellio Giacomini, Sébastien Bugeia, Garance Gutknecht, Gilliosa Spurrier-Bernard, Michel Cuendet, Fanny Muet, Veronica Aedo-Lopez, Nuria Mederos, Olivier Michielin, Alfredo Addeo, Sofiya Latifyan, Manuela Eicher. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 18.10.2023.)

Adoptive cell therapies (ACT) have demonstrated promise in the treatment of patients with cancer, leading to long-lasting responses and, in some cases, even cure. Technological advances have brought these individualized therapies closer to reality, establishing them as credible therapeutic option. However, to date, few efforts have been made to understand patients' experience during ACT trials. Patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs), which are instruments used to report PROs, are increasingly being used in oncology to capture patients' perspective, provide real-world data on treatment safety, and support decision-making processes, such as health economic decisions. Due to the inherent complexity of ACT, the inclusion of PROMs in this field remains limited. In this commentary, we discuss the benefit of capturing PROs in ACT trials, the challenges of PROM administration and collection, and we propose simple and actionable recommendations to promote their adoption in ACT trials., Competing Interests: Competing interests: GC reports grants from Celgene, grants from Boehringer-Ingelheim, personal fees from Genentech, grants from Roche, personal fees from Roche, grants from BMS, personal fees from BMS, personal fees from AstraZeneca, grants from Iovance Therapeutics, grants from Kite Pharma, personal fees from NextCure, personal fees from Geneos Tx, and personal fees from Sanofi/Aventis. MDM received grants or contracts to his institution from Tesaro and GSK, consulting fees from Novartis, Roche, AstraZeneca, Merck Serono, Pfizer, Merck Sharp & Dohme, Janssen, Eisai, Takeda, Boehringer Ingelheim, Servier; payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events from Novartis, Roche, AstraZeneca, Pfizer, Merck Sharp & Dohme, Janssen, Astellas, Boehringer Ingelheim; participation on a Data Safety Monitoring Board or Advisory Board for Merck Sharp & Dohme, Janssen, Astellas and Amgen. ME reports grants or contracts to her institution from Kaiku Health, Novartis, Roche, Vifor, BMS and Payment or honoraria for lectures, presentations from Roche, BMS and Vifor. The other authors have no conflict of interest to declare., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background and Aims: The occurrence rate of adverse events (AEs) related to care among hospitalized oncology patients in Switzerland remains unknown. The primary objective of this study was to describe, for the first time, the occurrence rate, type, severity of harm, and preventability of AEs related to care, reported in health records of hospitalized hematological and solid-tumor cancer patients in three Swiss hospitals., Methods: Using an adapted version of the validated Global Trigger Tool (GTT) from the Institute for Healthcare Improvement, we conducted a retrospective record review of patients discharged from oncology units over a 6-week period during 2018. Our convenience sample included all records from adult patients (≥18 years of age), diagnosed with cancer, and hospitalized (>24 hours). Per the GTT method, two trained nurses independently assessed patient records to identify AEs using triggers, and physicians from the included units analyzed the consensus of the two nurses. Together, they assessed the severity and preventability of each AE., Results: From the sample of 224 reviewed records, we identified 661 triggers and 169 AEs in 94 of them (42%). Pain related to care was the most frequent AE (n = 29), followed by constipation (n = 17). AEs rates were 75.4 per 100 admissions and 106.6 per 1000 patient days. Most of the identified AEs (78%) caused temporary harm to the patient and required an intervention. Among AEs during hospitalization (n = 125), 76 (61%) were considered not preventable, 28 (22%) preventable, and 21 (17%) undetermined., Conclusion: About half of the hospitalized oncology patients suffered from at least one AE related to care during their hospitalization. Pain, constipation, and nosocomial infections were the most frequent AEs. It is, therefore, essential to identify AEs to guide future clinical practice initiatives to ensure patient safety., Competing Interests: Dr. Manuela Eicher reports grants from Krebsliga Schweiz, grants from Altschüler Stiftung, personal fees from Vifor, grants from Roche, grants from Bristol Meyers Squibb, during the conduct of the study. Dr. Sara Colomer‐Lahiguera received honoraria from Vifor Pharma and research grants from Roche and Bristol Meyers Squibb. Prof. Solange Peters has received education grants, provided consultation, attended advisory boards, and/or provided lectures for: Abbvie, Amgen, AstraZeneca, Bayer, Biocartis, Boehringer‐Ingelheim, Bristol‐Myers Squibb, Clovis, Daiichi Sankyo, Debiopharm, Eli Lilly, F. Hoffmann‐La Roche, Foundation Medicine, Illumina, Janssen, Merck Sharp and Dohme, Merck Serono, Merrimack, Novartis, Pharma Mar, Pfizer, Regeneron, Sanofi, Seattle Genetics and Takeda, from whom she has received honoraria. The supporting source/financial relationship had no role in the study. All remaining authors have declared no conflicts of interest., (© 2020 The Authors. Health Science Reports published by Wiley Periodicals LLC.)