Achieving Comprehensive, Patient-Centered Cancer Services: Optimizing the Role of Advanced Practice Nurses at the Core of Precision Health.

OBJECTIVES: The field of oncology has been revolutionized by precision medicine, driven by advancements in molecular and genomic profiling. High-throughput genomic sequencing and non-invasive diagnostic methods have deepened our understanding of cancer biology, leading to personalized treatment approaches. Precision health expands on precision medicine, emphasizing holistic healthcare, integrating molecular profiling and genomics, physiology, behavioral, and social and environmental factors. Precision health encompasses traditional and emerging data, including electronic health records, patient-generated health data, and artificial intelligence-based health technologies. This article aims to explore the opportunities and challenges faced by advanced practice nurses (APNs) within the precision health paradigm. METHODS: We searched for peer-reviewed and professional relevant studies and articles on advanced practice nursing, oncology, precision medicine and precision health, and symptom science. RESULTS: APNs' roles and competencies align with the core principles of precision health, allowing for personalized interventions based on comprehensive patient characteristics. We identified educational needs and policy gaps as limitations faced by APNs in fully embracing precision health. CONCLUSION: APNs, including nurse practitioners and clinical nurse specialists, are ideally positioned to advance precision health. Nevertheless, it is imperative to overcome a series of barriers to fully leverage APNs' potential in this context. IMPLICATIONS FOR NURSING PRACTICE: APNs can significantly contribute to precision health through their competencies in predictive, preventive, and health promotion strategies, personalized and collaborative care plans, ethical considerations, and interdisciplinary collaboration. However, there is a need to foster education in genetics and genomics, encourage continuous professional development, and enhance understanding of artificial intelligence-related technologies and digital health. Furthermore, APNs' scope of practice needs to be reflected in policy making and legislation to enable effective contribution of APNs to precision health.

Mapping advanced practice nurses' scope of practice, satisfaction, and drivers of role performance.

Background: Advanced Practice Nurse (APN) roles in Switzerland include Clinical Nurse Specialist (CNS), Nurse Practitioner (NP) and blended roles. The variety contributes to unclear profiles and scope of practice. Aim: To describe a) the performance of APN tasks according to Hamric's competencies, b) job satisfaction, and c) barriers and facilitators to role performance. Methods: Nationwide cross-sectional survey among clinically working APNs. Inclusion criteria: academic degree, role with advanced nursing competency. Analysis of quantitative and qualitative data using inferential statistics and content analysis. Results: Of the 222 APNs, 49% (n = 108) described themselves as CNSs, 37% (n = 81) as working in a blended role, and 15% (n = 33) as NP. APNs provided the greatest proportion of their tasks in the competency direct clinical practice and the least in ethical decision-making. Group comparisons between roles revealed significant differences in the competencies: direct clinical practice, guidance and coaching, leadership, and evidence-based practice. Job satisfaction was high (76%, n = 165), most often described by the category work content/role (e.g., defined scope of practice). The most frequent barrier to role performance was the category scope of practice (e.g., unclear responsibilities); the most frequent facilitator was the category professional recognition (e.g., respect). Conclusion: The study highlights current APN scope of practice and can support the advancement of the role through clinical practice, educational institutions, and research.

EUSOMA quality indicators for non-metastatic breast cancer: An update.

INTRODUCTION: Quality care in breast cancer is higher if patients are treated in a Breast Center with a dedicated and specialized multidisciplinary team. Quality control is an essential activity to ensure quality care, which has to be based on the monitoring of specific quality indicators. Eusoma has proceeded with the up-dating of the 2017 Quality indicators for non-metastatic breast cancer based on the new diagnostic, locoregional and systemic treatment modalities. METHODS: To proceed with the updating, EUSOMA setup a multidisciplinary working group of BC experts and patients' representatives. It is a comprehensive set of QIs for early breast cancer care, which are classified as mandatory, recommended, or observational. For the first time patient reported outcomes (PROMs) have been included. As used in the 2017 EUSOMA QIs, evidence levels were based on the short version of the US Agency for Healthcare Research and Quality. RESULTS: This is a set of quality indicators representative for the different steps of the patient pathway in non-metastatic setting, which allow Breast Centres to monitor their performance with referring standards, i.e minimum standard and target. CONCLUSIONS: Monitoring these Quality Indicators, within the Eusoma datacentre will allow to have a state of the art picture at European Breast Centres level and the development of challenging research projects.

Testing a Model of Care for Patients on Immune Checkpoint Inhibitors Based on Electronic Patient-Reported Outcomes: Protocol for a Randomized Phase II Controlled Trial.

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.

Cancer care during the Covid-19 pandemic from the perspective of patients and their relatives: A qualitative study.

Objective: The Covid -19 pandemic has had a major influence on the organization of cancer care. Little is known about how patients with cancer and their relatives experienced this period. This study explored these experiences and levels of distress and resilience of Dutch cancer patients and their family caregivers during the Covid-19 pandemic. Methods: The qualitative design included in-depth interviews with cancer patients and their family caregivers to explore their experiences. The distress thermometer (NCCN-DT) and resilience questionnaire (CD-RISC2) were used for contextualizing. Data were analyzed by thematic analysis and descriptive statistics. Results: 40 patients with breast cancer, lung cancer, colorectal cancer, or melanoma who received active systemic anti-cancer therapy, were included with a median age of 60 years[SD11.1]. We also included fourteen family caregivers with a median age of 60 years [SD8.6].Five themes were identified: (1) Living with cancer during Covid-19, (2) Changes in cancer care, (3) Information and support, (4) Safety inside the hospital, and (5) Impact of vaccination. The mean score of NCCN-DT was 2.9[SD2.4] for patients and 4.3[SD2.7] for family caregivers. Mean score of CD-RISC2 was 6.6[SD1.4] for patients and 7.2[SD1] for family caregivers. Conclusions: Patients felt vulnerable during the pandemic and were strict in following the safety precautions. The limited companionship of family caregivers was experienced as the biggest restraint. In general, they felt safe inside the hospital. Vaccination brought some relief. Patients were satisfied with the provided support, but areas were identified which are amenable for redesigning care processes.

Socio-demographic and health-related determinants of patients' overall rating and experiences of cancer care.

BACKGROUND: Understanding how patient-reported experiences of care and overall rating of care vary among patients with different characteristics is useful to help interpret results from patient experience surveys and design targeted improvement interventions. The primary objective of this paper was to identify the socio-demographic and health-related characteristics independently associated with overall rating of cancer care. The secondary objective was to explore if and how these characteristics were associated with specific experiences of cancer care. METHODS: This cross-sectional multicenter study analyzed self-reported data collected from 2696 patients diagnosed with breast, prostate, lung, colorectal, skin, or hematological cancer from four large hospitals in French-speaking Switzerland. Multivariate logistic regressions with purposeful stepwise selection of independent variables were used to identify the socio-demographic and health-related characteristics independently associated with overall rating of cancer care in the primary analyses. In the secondary analyses, we ran the multivariate model from the primary analyses with specific experiences of care as outcomes to estimate the adjusted odds ratios (OR) and 95% confidence intervals (CI) of the selected characteristics. RESULTS: Respondents' mean rating of overall cancer care was 8.5 on a scale from 0 to 10, with 17% categorized as reporting a low rating (0-7 rating). Being a woman (OR 1.43, 95% CI 1.12-1.83), not being Swiss (OR 1.47, 95% CI 1.12-1.94), reporting lower health literacy (OR 1.95, 95% CI 1.54-2.47), preferring making medical decisions alone (OR 1.92, 95% CI 1.38-2.67), having forgone care due to cost (OR 1.72, 95% CI 1.29-2.29), having used complementary medicine (OR 1.55, 95% CI 1.22-1.97), and reporting poorer health (OR 3.12, 95% CI 2.17-4.50) were all independently associated with a low rating of overall cancer care. Poorer health, lower health literacy, and having forgone care were the three characteristics most often associated with problematic experiences of care. CONCLUSIONS: Our results identified several patient characteristics consistently associated with lower overall rating of care and specific experiences of cancer care. Among these determinants, health literacy and financial hardship emerged as key recurring factors shaping poor patient experiences that should be prioritized for attention by cancer care services.

Development of an eHealth-enhanced model of care for the monitoring and management of immune-related adverse events in patients treated with immune checkpoint inhibitors.

PURPOSE: The use of electronic patient-reported outcome (ePRO) data in routine care has been tied to direct patient benefits such as improved quality of care and symptom control and even overall survival. The modes of action behind such benefits are seldom described in detail. Here, we describe the development of a model of care leveraging ePRO data to monitor and manage symptoms of patients treated with immune checkpoint inhibitors. METHODS: Development was split into four stages: (1) identification of an underlying theoretical framework, (2) the selection of an ePRO measure (ePROM), (3) the adaptation of an electronic application to collect ePRO data, and (4) the description of an ePRO-oriented workflow. The model of care is currently evaluated in a bicentric longitudinal randomized controlled phase II trial, the IePRO study. RESULTS: The IePRO model of care is grounded in the eHealth Enhanced Chronic Care Model. Patients are prompted to report symptoms using an electronic mobile application. Triage nurses are alerted, review the reported symptoms, and contact patients in case of a new or worsening symptom. Nurses use the UKONS 24-hour telephone triage tool to issue patient management recommendations to the oncology team. Adapted care coordinating procedures facilitate team collaboration and provide patients with timely feedback. CONCLUSION: This report clarifies how components of care are created and modified to leverage ePRO to enhance care. The model describes a workflow that enables care teams to be proactive and provide patients with timely, multidisciplinary support to manage symptoms.

Patient and public involvement in cancer research: A scoping review.

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.

Validation of the newly developed Advanced Practice Nurse Task Questionnaire: A national survey.

AIM: To describe psychometric validation of the newly developed Advanced Practice Nurse Task Questionnaire. DESIGN: Cross-sectional quantitative study. METHODS: The development of the questionnaire followed an adapted version of the seven steps described in the guide by the Association for Medical Education in Europe. A nationwide online survey tested the construct and structural validity and internal consistency using an exploratory factor analysis, Cronbach's alpha coefficient and a Kruskal-Wallis test to compare the hypotheses. RESULTS: We received 222 questionnaires between January and September 2020. The factor analysis produced a seven-factor solution as suggested in Hamric's model. However, not all item loadings aligned with the framework's competencies. Cronbach's alpha of factors ranged between .795 and .879. The analysis confirmed the construct validity of the Advanced Practice Nurse Task Questionnaire. The tool was able to discriminate the competencies of guidance and coaching, direct clinical practice and leadership across the three advanced practice nurse roles clinical nurse specialist, nurse practitioner or blended role. CONCLUSION: A precise assessment of advanced practice nurse tasks is crucial in clinical practice and in research as it may be a basis for further refinement, implementation and evaluation of roles. IMPACT: The Advanced Practice Nurse Task Questionnaire is the first valid tool to assess tasks according to Hamric's model of competencies independently of the role or the setting. Additionally, it distinguishes the most common advanced practice nurse roles according to the degree of tasks in direct clinical practice and leadership. The tool may be applied in various countries, independent of the degree of implementation and understanding of advanced nursing practice. REPORTING METHOD: The STARD 2015 guideline was used to report the study. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Patient-reported experiences of cancer care related to the COVID-19 pandemic in Switzerland.

PURPOSE: This study aims to describe the experience of Swiss oncological patients during the COVID-19 pandemic. METHODS: A national multi-center study including five hospitals covering the three main language regions of Switzerland was conducted between March and July 2021. Patients with melanoma, breast, lung, or colon cancer receiving active systemic anti-cancer treatment at the time of the COVID-19 pandemic were included. We conducted semi-structured telephone or onsite interviews alongside the administration of distress and resilience-validated questionnaires. Thematic analysis was performed for the qualitative data and descriptive statistics for the quantitative data. RESULTS: Sixty-two cancer patients with a mean age of 61 (SD=14) (58% female) were interviewed. Based on the interviews, we identified that the experience of having cancer during the COVID-19 pandemic was related to five dimensions: psychological, social, support, healthcare, and vaccination. Three themes transverse the five dimensions: (a) needs, (b) positive changes, and (c) phases of the pandemic. In general, patients did not experience delays or disruptions in their cancer treatment nor felt additionally burdened by the pandemic. Lockdown and isolation were reported as mixed experiences (positive and negative), and access to vaccination reassured patients against the risk of infection and instilled hope to return to normalcy. Additionally, we found low distress levels (M=2.9; SD=2.5) and high resilience scores (M=7; SD=1.3) in these patients. CONCLUSION: Swiss patients with cancer did not express major needs or disruptions in their care during this period of the COVID-19 pandemic. Results identify the mixed experiences of patients and highlight the high resilience levels.

Assessing the impact of digital patient monitoring on health outcomes and healthcare resource usage in addition to the feasibility of its combination with at-home treatment, in participants receiving systemic anticancer treatment in clinical practice: protocol for an interventional, open-label, multicountry platform study (ORIGAMA).

INTRODUCTION: Digital patient monitoring (DPM) tools can enable more effective clinical care and improved patient outcomes in cancer. However, their broad adoption requires ease of use and demonstration of real-world clinical utility/impact. ORIGAMA (MO42720) is an interventional, open-label, multicountry platform study investigating the clinical utility of DPM tools and specific treatments. ORIGAMA will begin with two cohorts that aim to assess the impact of the atezolizumab-specific Roche DPM Module (hosted on the Kaiku Health DPM platform (Helsinki, Finland)) on health outcomes and healthcare resource usage, and its feasibility to support at-home treatment administration, in participants receiving systemic anticancer treatment. Other digital health solutions may be added to future cohorts. METHODS AND ANALYSIS: In Cohort A, participants with metastatic non-small cell lung cancer (NSCLC), extensive-stage SCLC or Child Pugh A unresectable hepatocellular carcinoma will be randomised to a locally approved anticancer regimen containing intravenous atezolizumab (TECENTRIQ, F. Hoffmann-La Roche Ltd/Genentech) and local standard-of-care support, with/without the Roche DPM Module. Cohort B will assess the feasibility of the Roche DPM Module in supporting administration of three cycles of subcutaneous atezolizumab (1875 mg; Day 1 of each 21-day cycle) in the hospital, followed by 13 cycles at home by a healthcare professional (ie, flexible care), in participants with programmed cell-death ligand 1-positive, early-stage NSCLC. The primary endpoints are the mean difference in change of the participant-reported Total Symptom Interference Score at Week 12 from baseline (Cohort A) and flexible care adoption rate at Cycle 6 (Cohort B). ETHICS AND DISSEMINATION: This study will be conducted according to the Declaration of Helsinki, and/or the applicable laws and regulations of the country in which the research is conducted, whichever affords the greater protection to the individual. The study received its first Ethics Committee approval in Spain in October 2022. Participants will provide written informed consent in a face-to-face setting. The results of this study will be presented at national and/or international congresses and disseminated via publication in peer-reviewed journals. TRIAL REGISTRATION NUMBER: NCT05694013.

The Lausanne Hospitality Model: a model integrating hospitality into supportive care.

PURPOSE: Cancer care is undergoing a conceptual shift with the introduction of the principles of patient-centered care to support patients' individual needs. These needs include those related to hospitality during cancer treatments. This paper aims to provide an extension of the supportive care framework by bringing in the hospitality approach inspired by the hotel industry. METHOD: The "Lausanne Hospitality Model," integrating hospitality into supportive care, was developed through an iterative process, combining expertise in supportive care and health services research, communication, and the hotel industry. RESULTS: This conceptual paper integrates hospitality and service sciences into the supportive care framework. The "Lausanne Hospitality Model" offers new insights into the notions of cancer journey, patient experience, services, and practices that may be involved when facilitating hospitality. While most concepts used in the model are based on prior research, they have not been combined previously. The model highlights the place of hospitality in the patient's experience within cancer services and, by extension, its role in professional practice. CONCLUSION: Practices involved in the delivery of cancer care need to reinforce the importance attributed to hospitality services, as they impact patients' experiences. By integrating the hospitality perspective into healthcare delivery and supportive care, this paper addresses previously theoretically overlooked aspects that impact patients' experiences during cancer care.

Big Data in Oncology Nursing Research: State of the Science.

OBJECTIVE: To review the state of oncology nursing science as it pertains to big data. The authors aim to define and characterize big data, describe key considerations for accessing and analyzing big data, provide examples of analyses of big data in oncology nursing science, and highlight ethical considerations related to the collection and analysis of big data. DATA SOURCES: Peer-reviewed articles published by investigators specializing in oncology, nursing, and related disciplines. CONCLUSION: Big data is defined as data that are high in volume, velocity, and variety. To date, oncology nurse scientists have used big data to predict patient outcomes from clinician notes, identify distinct symptom phenotypes, and identify predictors of chemotherapy toxicity, among other applications. Although the emergence of big data and advances in computational methods provide new and exciting opportunities to advance oncology nursing science, several challenges are associated with accessing and using big data. Data security, research participant privacy, and the underrepresentation of minoritized individuals in big data are important concerns. IMPLICATIONS FOR NURSING PRACTICE: With their unique focus on the interplay between the whole person, the environment, and health, nurses bring an indispensable perspective to the interpretation and application of big data research findings. Given the increasing ubiquity of passive data collection, all nurses should be taught the definition, characteristics, applications, and limitations of big data. Nurses who are trained in big data and advanced computational methods will be poised to contribute to guidelines and policies that preserve the rights of human research participants.

Resilience in adults with colorectal cancer: Refining a conceptual model using a descriptive qualitative approach.

AIMS: To examine and refine a conceptual model of resilience in adult cancer care based on the perspectives and experiences of resilience in adults with colorectal cancer. DESIGN: A descriptive qualitative study was performed. METHODS: Twelve participants diagnosed with colorectal cancer that had completed cancer treatment with curative intent were recruited from a tertiary hospital in Australia from July to December 2019. The meaning of individual resilience was explored using in-depth individual interviews. Data were analysed using inductive thematic analysis. Following data analysis, the elements of the conceptual model of resilience were mapped against the themes and subthemes to refine the model. RESULTS: Five themes were identified as key elements of individual resilience in adults with colorectal cancer: (1) seeking motivations to move forward; (2) striving for normality; (3) adapting and managing self; (4) drawing on external supports; (5) redefining self. A refined conceptual model of individual resilience in adults with colorectal cancer was developed based on the integration of the themes and the elements of the conceptual model of individual resilience. CONCLUSIONS: Our refined conceptual model of individual resilience in adults with colorectal cancer could facilitate nurses' and other health professionals' understanding of the process of how resilient individuals with colorectal cancer overcome their illness-related adversity. This refined model may be used to further develop and test cancer-specific resilience measures and develop interventions to facilitate resilience in people living with colorectal cancer. IMPACT: This research identified five features of resilience in adults with colorectal cancer and refined a conceptual model of resilience in adults with colorectal cancer. The findings could help nurses and other health professionals with identifying individuals who are at risk of adaptation difficulties and contribute to an early referral to psychosocial support services.

A differential process mining analysis of COVID-19 management for cancer patients.

During the acute phase of the COVID-19 pandemic, hospitals faced a challenge to manage patients, especially those with other comorbidities and medical needs, such as cancer patients. Here, we use Process Mining to analyze real-world therapeutic pathways in a cohort of 1182 cancer patients of the Lausanne University Hospital following COVID-19 infection. The algorithm builds trees representing sequences of coarse-grained events such as Home, Hospitalization, Intensive Care and Death. The same trees can also show probability of death or time-to-event statistics in each node. We introduce a new tool, called Differential Process Mining, which enables comparison of two patient strata in each node of the tree, in terms of hits and death rate, together with a statistical significance test. We thus compare management of COVID-19 patients with an active cancer in the first vs. second COVID-19 waves to quantify hospital adaptation to the pandemic. We also compare patients having undergone systemic therapy within 1 year to the rest of the cohort to understand the impact of an active cancer and/or its treatment on COVID-19 outcome. This study demonstrates the value of Process Mining to analyze complex event-based real-world data and generate hypotheses on hospital resource management or on clinical patient care.

Experiences of cancer care in COVID-19: A longitudinal qualitative study.

PURPOSE: This study aimed to explore the cancer care experiences of people living with and beyond cancer during COVID-19 in Ireland. METHODS: The study adopted a longitudinal qualitative design using semi-structured interviews with sixteen participants. Interviews were undertaken on three occasions over six months (January-June 2021). The National Comprehensive Cancer Network Distress Thermometer (NCCN DT), and Connor-Davidson-Resilience Scale (CD-RISC2) were also used as part of the interviews to measure distress and resilience. Thematic analysis of interview data was conducted and participants' self-rating for distress and resilience was analysed using descriptive statistics. RESULTS: Sixteen patients participated. The findings revealed participants' constant fear of COVID-19 over time and efforts to stay safe by following the 'rules'. Isolation was a common experience as COVID-19 restrictions resulted in being alone when attending the hospital for treatment and limited support from family and friends. Telephone follow-up was limited in terms of support and patients' opportunity to ask questions. For a minority, COVID-19 restrictions meant they were 'not missing out'. On average, participants reported moderate to high levels of resilience at all time points. Distress scores were low but trended upwards from T1 to T2. CONCLUSIONS: The findings highlight the need to avoid restrictions on carers accompanying their close relatives to the hospital for treatment. An evaluation of the effects of the rapid introduction of telephone follow-up on patient outcomes is warranted.

Patients' experiences with cancer care in Switzerland: Results of a multicentre cross-sectional survey.

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.

A Narrative Review on the Collection and Use of Electronic Patient-Reported Outcomes in Cancer Survivorship Care with Emphasis on Symptom Monitoring.

Electronic patient-reported outcome (ePRO) applications promise great added value for improving symptom management and health-related quality of life. The aim of this narrative review is to describe the collection and use of ePROs for cancer survivorship care, with an emphasis on ePRO-symptom monitoring. It offers many different perspectives from research settings, while current implementation in routine care is ongoing. ePRO collection optimizes survivorship care by providing insight into the patients' well-being and prioritizing their unmet needs during the whole trajectory from diagnosis to end-of-life. ePRO-symptom monitoring can contribute to timely health risk detection and subsequently allow earlier intervention. Detection is optimized by automatically generated alerts that vary from simple to complex and multilayered. Using ePRO-symptoms during in-hospital consultation enhances the patients' conversation with the health care provider before making informed decisions about treatments, other interventions, or self-management. ePRO(-symptoms) entail specific implementation issues and complementary ethics considerations. The latter is due to privacy concerns, digital divide, and scarcity of adequately representative data for particular groups of patients.

Nurse-Led Consultation and Symptom Burden in Patients with Head and Neck Cancer: A Comparative Analysis of Routine Clinical Data.

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.