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BACKGROUND: Patient experience surveys gather information on various aspects of care via numerous survey items. Identifying the most critical areas of patient experience to prioritize for quality care improvement can be challenging. The objective of this study was to determine which care experience items are the drivers influencing patients' overall rating of cancer care. METHODS: Data from 2750 adult patients with cancer from the second wave of the Swiss Cancer Patient Experiences study were analyzed. This cross-sectional survey was conducted in eight Swiss hospitals from September 2021 to February 2022. Stepwise logistic regression examined the relationship between overall care rating and 29 patient experience items covering different patient-centered care dimensions while adjusting for sociodemographic and health variables. RESULTS: Overall, patients rated their cancer care experience at 8.9 out of 10. Stepwise regression identified seven drivers contributing to overall care rating. The strongest drivers were "professionals worked well together" (odds ratio [OR], 4.81) and "tests were not repeated" (OR, 2.09) from the coordination and integration dimension, "offered support for symptoms during treatment" (OR, 2.11) from the physical comfort dimension, followed by "hospital staff ensured available home support" (OR, 1.99), "offered to see health professional for concerns" (OR, 1.91), "treatment options were explained" (OR, 1.75), and "involved in treatment decisions as desired" (OR, 1.68). CONCLUSIONS: This study evaluated the care experiences of patients with cancer with a comprehensive tool that identified seven key factors independently associated with overall care rating. By concentrating on these areas, hospitals can not only improve the patient care experience but also efficiently allocate resources to quality improvement initiatives.
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OBJECTIVE: To examine the effects of six relaxation techniques on perceived momentary relaxation and a possible association of relaxation effects with time and practice experience in people with cancer. METHODS: We used data from participants with cancer in a larger study practicing app-based relaxation techniques over 10 weeks, assessed momentary relaxation before and after every third relaxation practice, and analyzed momentary relaxation changes with a linear mixed-effects model. RESULTS: The sample included 611 before-after observations from 91 participants (70 females (76.9%)) with a mean age of 55.43 years (SD 10.88). We found moderate evidence for variations in momentary relaxation changes across different techniques (P = .026), with short meditation, mindfulness meditation, guided imagery, and progressive muscle relaxation more frequently observed and leading to more relaxation than body scan and walking meditation. Furthermore, we found moderate evidence for increasing momentary relaxation changes over time (P = .046), but no evidence for an association between momentary relaxation and the number of previous observations (proxy for practice experience; P = .47). CONCLUSION: We compared six app-based relaxation techniques in a real-life setting of people with cancer. The observed variations in perceived momentary relaxation appear to correspond with the popularity of the techniques used: The most popular relaxation techniques were the most effective and the least popular were the least effective. The effects increased over time, likely caused by dropout of individuals who gained no immediate benefit. Our findings open an interesting avenue for future research to better understand which relaxation techniques work best for whom in which situations. TRIAL REGISTRATION: DRKS00027546; https://drks.de/search/en/trial/DRKS00027546.
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Meditação , Aplicativos Móveis , Neoplasias , Terapia de Relaxamento , Humanos , Feminino , Terapia de Relaxamento/métodos , Pessoa de Meia-Idade , Masculino , Neoplasias/psicologia , Neoplasias/terapia , Idoso , Meditação/métodos , Adulto , Atenção Plena/métodos , RelaxamentoRESUMO
BACKGROUND: Patients with fewer socioeconomic and health literacy resources are disadvantaged in their access and use of healthcare, which may give rise to worse experiences with care and thus inequalities in patient experiences. However, only a limited number of studies have examined how socioeconomic and health literacy factors shape inequalities in patients' experiences with cancer care. OBJECTIVE: To examine whether patients' experiences with cancer care differ according to their economic status and health literacy. METHODS: Secondary analysis of data on 2789 adult patients diagnosed with cancer from the Swiss Cancer Patient Experiences-2 (SCAPE-2) study, a cross-sectional survey conducted in eight hospitals across Switzerland from September 2021 to February 2022. Regression analysis was applied to examine the independent effect of patients' economic status and health literacy on various outcomes of experiences with cancer care, covering eight different dimensions of patient-centred care, controlling for confounding factors. RESULTS: Adjusted regression analysis showed that patients with lower economic status reported significantly worse experiences with cancer care in 12 out of 29 specific care experiences, especially in the dimensions of 'respect for patients' preferences' and 'physical comfort' where all items of experiences were associated with economic status. Additionally, lower health literacy was associated with worse patient experiences in 23 specific care experiences. All items in the dimensions of 'respect for patients' preferences', 'physical comfort' and 'emotional support' were associated with health literacy. DISCUSSION: This study revealed significant inequalities in experiences with cancer care shaped by the economic status and health literacy of patients across different dimensions of patient-centred care. It is essential to address the needs of more disadvantaged patients who face obstacles in their access and use of the healthcare system, not only to mitigate inequalities in cancer care but also to avoid inequalities in health outcomes.
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Letramento em Saúde , Disparidades em Assistência à Saúde , Neoplasias , Humanos , Letramento em Saúde/estatística & dados numéricos , Neoplasias/terapia , Neoplasias/psicologia , Feminino , Masculino , Estudos Transversais , Pessoa de Meia-Idade , Suíça , Idoso , Adulto , Fatores Socioeconômicos , Satisfação do Paciente/estatística & dados numéricos , Assistência Centrada no Paciente , Inquéritos e Questionários , Status EconômicoRESUMO
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.
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Oncologia , Projetos de Pesquisa , Humanos , Ensaios Clínicos Fase I como Assunto , Assistência Centrada no Paciente , Participação do Paciente , Pesquisa sobre Serviços de Saúde , Neoplasias/terapiaRESUMO
BACKGROUND: Mobile health (mHealth) apps offer unique opportunities to support self-care and behavior change, but poor user engagement limits their effectiveness. This is particularly true for fully automated mHealth apps without any human support. Human support in mHealth apps is associated with better engagement but at the cost of reduced scalability. OBJECTIVE: This work aimed to (1) describe the theory-informed development of a fully automated relaxation and mindfulness app to reduce distress in people with cancer (CanRelax app 2.0), (2) describe engagement with the app on multiple levels within a fully automated randomized controlled trial over 10 weeks, and (3) examine whether engagement was related to user characteristics. METHODS: The CanRelax app 2.0 was developed in iterative processes involving input from people with cancer and relevant experts. The app includes evidence-based relaxation exercises, personalized weekly coaching sessions with a rule-based conversational agent, 39 self-enactable behavior change techniques, a self-monitoring dashboard with gamification elements, highly tailored reminder notifications, an educational video clip, and personalized in-app letters. For the larger study, German-speaking adults diagnosed with cancer within the last 5 years were recruited via the web in Switzerland, Austria, and Germany. Engagement was analyzed in a sample of 100 study participants with multiple measures on a micro level (completed coaching sessions, relaxation exercises practiced with the app, and feedback on the app) and a macro level (relaxation exercises practiced without the app and self-efficacy toward self-set weekly relaxation goals). RESULTS: In week 10, a total of 62% (62/100) of the participants were actively using the CanRelax app 2.0. No associations were identified between engagement and level of distress at baseline, sex assigned at birth, educational attainment, or age. At the micro level, 71.88% (3520/4897) of all relaxation exercises and 714 coaching sessions were completed in the app, and all participants who provided feedback (52/100, 52%) expressed positive app experiences. At the macro level, 28.12% (1377/4897) of relaxation exercises were completed without the app, and participants' self-efficacy remained stable at a high level. At the same time, participants raised their weekly relaxation goals, which indicates a potential relative increase in self-efficacy. CONCLUSIONS: The CanRelax app 2.0 achieved promising engagement even though it provided no human support. Fully automated social components might have compensated for the lack of human involvement and should be investigated further. More than one-quarter (1377/4897, 28.12%) of all relaxation exercises were practiced without the app, highlighting the importance of assessing engagement on multiple levels.
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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.
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Prática Avançada de Enfermagem , Neoplasias , Papel do Profissional de Enfermagem , Enfermagem Oncológica , Assistência Centrada no Paciente , Medicina de Precisão , Humanos , Medicina de Precisão/métodos , Prática Avançada de Enfermagem/métodos , Enfermagem Oncológica/normas , Enfermagem Oncológica/métodos , Neoplasias/enfermagem , Feminino , MasculinoRESUMO
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.
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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.
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Neoplasias da Mama , Indicadores de Qualidade em Assistência à Saúde , Humanos , Feminino , Neoplasias da Mama/diagnóstico por imagem , Neoplasias da Mama/terapia , Qualidade da Assistência à SaúdeRESUMO
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.
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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.
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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.
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Neoplasias , Masculino , Feminino , Humanos , Estudos Transversais , Inquéritos e Questionários , Autorrelato , Suíça/epidemiologia , Demografia , Neoplasias/epidemiologia , Neoplasias/terapiaRESUMO
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.
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Aplicativos Móveis , Telemedicina , Humanos , Inibidores de Checkpoint Imunológico , Oncologia , Telemedicina/métodos , Medidas de Resultados Relatados pelo PacienteRESUMO
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.
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COVID-19 , Neoplasias , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Suíça/epidemiologia , Pandemias , Controle de Doenças Transmissíveis , Medidas de Resultados Relatados pelo Paciente , Neoplasias/terapiaRESUMO
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.
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Prática Avançada de Enfermagem , Educação Médica , Humanos , Estudos Transversais , Inquéritos e Questionários , Europa (Continente) , Psicometria , Reprodutibilidade dos TestesRESUMO
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.
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Neoplasias , Participação do Paciente , Humanos , Projetos de Pesquisa , Neoplasias/terapia , CuidadoresRESUMO
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.
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Big Data , Pesquisa em Enfermagem , Humanos , Oncologia , Pesquisa em Enfermagem/métodos , Enfermagem Oncológica , PesquisadoresRESUMO
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.
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Neoplasias , Humanos , Neoplasias/terapia , Satisfação do Paciente , Comunicação , Assistência Centrada no PacienteRESUMO
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.
Assuntos
Carcinoma Pulmonar de Células não Pequenas , Neoplasias Hepáticas , Neoplasias Pulmonares , Humanos , Carcinoma Pulmonar de Células não Pequenas/tratamento farmacológico , Atenção à Saúde , Estudos de Viabilidade , Neoplasias Pulmonares/tratamento farmacológico , Monitorização Fisiológica , Resultado do Tratamento , Ensaios Clínicos Controlados Aleatórios como Assunto , Estudos Multicêntricos como AssuntoRESUMO
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.