A Smart Digital Health Platform to Enable Monitoring of Quality of Life and Frailty in Older Patients with Cancer: A Mixed-Methods, Feasibility Study Protocol.

OBJECTIVES: LifeChamps is an EU Horizon 2020 project that aims to create a digital platform to enable monitoring of health-related quality of life and frailty in patients with cancer over the age of 65. Our primary objective is to assess feasibility, usability, acceptability, fidelity, adherence, and safety parameters when implementing LifeChamps in routine cancer care. Secondary objectives involve evaluating preliminary signals of efficacy and cost-effectiveness indicators. DATA SOURCES: This will be a mixed-methods exploratory project, involving four study sites in Greece, Spain, Sweden, and the United Kingdom. The quantitative component of LifeChamps (single-group, pre-post feasibility study) will integrate digital technologies, home-based motion sensors, self-administered questionnaires, and the electronic health record to (1) enable multimodal, real-world data collection, (2) provide patients with a coaching mobile app interface, and (3) equip healthcare professionals with an interactive, patient-monitoring dashboard. The qualitative component will determine end-user usability and acceptability via end-of-study surveys and interviews. CONCLUSION: The first patient was enrolled in the study in January 2023. Recruitment will be ongoing until the project finishes before the end of 2023. IMPLICATIONS FOR NURSING PRACTICE: LifeChamps provides a comprehensive digital health platform to enable continuous monitoring of frailty indicators and health-related quality of life determinants in geriatric cancer care. Real-world data collection will generate "big data" sets to enable development of predictive algorithms to enable patient risk classification, identification of patients in need for a comprehensive geriatric assessment, and subsequently personalized care.

An Exploration of Family Caregivers' Health Care Needs When Caring for Patients With Cancer in the Resource-Challenged Context of West Java, Indonesia.

OBJECTIVE: Family caregivers in West Java, Indonesia, care for their family members at home or in a shelter with limited sources. This study aims to establish the needs of family caregivers when providing informal care to family members with cancer in the resource-challenged context of West Java, Indonesia DATA SOURCES: This cross-sectional survey involved family caregivers, using convenience sampling. Data were collected using the Supportive Care Needs Survey-Partners and Caregivers, translated into Indonesian. Descriptive statistics were computed and reported. We recruited 220 individuals. Our typical participant was a married (49.5%), housewife (35.5%) with primary school level education (35.6%). Just more than half the sample were men (50.9%). Our participants had a mean age of 40.2 years, had been caregivers for a mean 1.2 years, and traveled a mean 164.7 km to accompany patients to medical appointments. Our participants reported unmet supportive care needs in all domains, except for sexuality. The topmost unmet need was finding out about financial support CONCLUSION: Our sample struggled to balance their living allowance and budget for cancer treatment. They also need information to care for their family. The need for financial support for patients and family caregivers was the most important finding. Our findings will be valuable in planning ahead to enhance the status of supportive and palliative care provided in West Java, Indonesia. IMPLICATIONS FOR NURSING PRACTICE: Flexible and comprehensive nurse-led interventions should be developed to support family caregivers fulfill their roles and sustaining their quality of life.

Healthcare professional perceived barriers and facilitators to discussing sexual wellbeing with patients after diagnosis of chronic illness: A mixed-methods evidence synthesis.

OBJECTIVES: To explore healthcare professional perceived barriers and facilitators to discussing sexual health and wellbeing with patients after diagnosis of chronic illness. METHODS: Five databases were searched and included data were synthesised using a meta-ethnographic approach. Confidence in findings was assessed using the GRADE-CERQual framework. Searches, extraction and quality assessment procedures were conducted independently by at least two authors. RESULTS: Concepts extracted from 30 included studies were used to develop a conceptual framework based on five overarching themes. These were [1] individual and societal attitudes to sex and sexual wellbeing [2], patient specific factors [3], organizational and professional factors [4], strategies to overcome barriers in practice and [5] perceived training needs. Healthcare professionals acknowledged the importance of discussing and providing support for sexual wellbeing needs, but recognized it is not routinely provided. CONCLUSIONS: While patient specific factors and organizational issues such as lack of time were frequently identified as barriers, intra-personal and social perceptions appear to have the strongest influence on healthcare professional perspectives. PRACTICE IMPLICATIONS: Brief education and tools to support healthcare professionals to have effective conversations with patients are required. These should address social barriers, normalise sexual issues, and support healthcare professionals to initiate discussions around sexual concerns.

Development and preliminary testing of a brief clinical tool to enable daily monitoring of chemotherapy toxicity: The Daily Chemotherapy Toxicity self-Assessment Questionnaire.

Close monitoring of chemotherapy toxicity can be instrumental in ensuring prompt symptom management and quality care. Our aim was to develop a brief clinical tool to enable daily assessment of chemotherapy toxicity and investigate/establish its content validity, feasibility/applicability, internal consistency and stability. Development of the Daily Chemotherapy Toxicity self-Assessment Questionnaire (DCTAQ) was based on an initial item pool created from two scoping reviews. Expert panel review (n = 15) and cognitive debriefing with patients with cancer (n = 7) were used to establish content validity. Feasibility/acceptability, applicability (self-report vs. interview-like administration), internal consistency (KR-20) and test-retest reliability (at 1-hr intervals) of the DCTAQ were field-tested with 82 patients with breast or colorectal cancer receiving active chemotherapy at eight hospitals. Initial development/content validity stages enabled item revisions and re-wording that led to a final, 11-item DCTAQ version with 10 core symptom items plus one open-ended "any other symptom" item. Feasibility and acceptability were demonstrated through the absence of participant withdrawals, absence of missing data and no complaints about tool length. The DCTAQ was found to have modest internal consistency (KR-20 = 0.56), but very good test-retest reliability. The DCTAQ is a brief clinical tool that allows for rapid and accurate daily assessments of chemotherapy toxicity in clinical practice.

Employing patient-reported outcome (PRO) measures to support newly diagnosed patients with melanoma: Feasibility and acceptability of a holistic needs assessment intervention.

PURPOSE: Living with a melanoma diagnosis can be challenging. We aimed to assess the feasibility, acceptability, and perceived value of a nurse-led intervention that utilised patient-reported outcome (PRO) measures to identify and address the supportive care needs of newly diagnosed patients with Stage I/II melanoma over the first 4 months post-diagnosis. METHODS: We conducted an exploratory, repeated-measures, single-arm, feasibility trial. One baseline (4 weeks post-diagnosis; T1) and one follow-up intervention session (4 weeks after wide local excision; T3) took place, two months apart. Patient survey data were collected monthly, at four assessment points (T1-T4), followed by exit interviews. RESULTS: A recruitment rate of 55% (10/18) was achieved. The skin cancer nurse specialist (CNS) performed 19 in-clinic patient assessments within 6 months. One patient missed their follow-up intervention session (90% retention rate). Three participants (30%) were lost to follow-up at T4. Patients endorsed the standardised use of easy-to-use PRO measures as a means to help them shortlist, report and prioritise their needs. The CNS viewed the intervention as a highly structured activity that allowed tailoring support priority needs. A sizeable reduction in information needs was found from T1 to T4 (Standardised Response Mean [SRM] change = -0.99; p < 0.05). From T1 to T2, significant reductions in psychological (SRM change = -1.18; p < 0.001), practical (SRM change = -0.67; p < 0.05) and sexuality needs (SRM change = -0.78; p < 0.05) were observed. CONCLUSIONS: The intervention appears to be feasible in clinical practice and acceptable to both patients with newly diagnosed melanoma and clinicians. Future research is warranted to test its effectiveness against standard care.

The eSMART study protocol: a randomised controlled trial to evaluate electronic symptom management using the advanced symptom management system (ASyMS) remote technology for patients with cancer.

INTRODUCTION: While some evidence exists that real-time remote symptom monitoring devices can decrease morbidity and prevent unplanned admissions in oncology patients, overall, these studies have significant methodological weaknesses. The electronic Symptom Management using the Advanced Symptom Management System (ASyMS) Remote Technology (eSMART) study is designed to specifically address these weaknesses with an appropriately powered, repeated-measures, parallel-group stratified randomised controlled trial of oncology patients. METHODS AND ANALYSIS: A total of 1108 patients scheduled to commence first-line chemotherapy (CTX) for breast, colorectal or haematological cancer will be recruited from multiple sites across five European countries.Patients will be randomised (1:1) to the ASyMS intervention (intervention group) or to standard care currently available at each site (control group). Patients in the control and intervention groups will complete a demographic and clinical questionnaire, as well as a set of valid and reliable electronic patient-reported outcome measures at enrolment, after each of their CTX cycles (up to a maximum of six cycles) and at 3, 6, 9 and 12 months after completion of their sixth cycle of CTX. Outcomes that will be assessed include symptom burden (primary outcome), quality of life, supportive care needs, anxiety, self-care self-efficacy, work limitations and cost effectiveness and, from a health professional perspective, changes in clinical practice (secondary outcomes). ETHICS AND DISSEMINATION: Ethical approval will be obtained prior to the implementation of all major study amendments. Applications will be submitted to all of the ethics committees that granted initial approval.eSMART received approval from the relevant ethics committees at all of the clinical sites across the five participating countries. In collaboration with the European Cancer Patient Coalition (ECPC), the trial results will be disseminated through publications in scientific journals, presentations at international conferences, and postings on the eSMART website and other relevant clinician and consumer websites; establishment of an eSMART website (www.esmartproject.eu) with publicly accessible general information; creation of an eSMART Twitter Handle, and production of a toolkit for implementing/utilising the ASyMS technology in a variety of clinical practices and other transferable health care contexts. TRIAL REGISTRATION NUMBER: NCT02356081.

Effects of patient and personal demographic, clinical and psychosocial characteristics on the burden of family members caring for patients with advanced cancer in Greece.

PURPOSE: Caregiving burden affects the lives of family members providing care to patients with advanced cancer, with a host of factors possibly contributing to this. The aim of this study was to explore the effects of patient and caregiver variables on the perceptions of burden in families caring for a loved one living with advanced cancer in Greece. METHODS: A convenience sample of 100 pairs of patients receiving palliative radiotherapy for advanced cancer and their respective primary family caregivers were consecutively recruited at one radiotherapy centre. Patients and caregivers completed a set of questionnaires during face-to-face interviews. Correlational and multiple regression analyses were performed to identify potential predictors of caregiving burden. RESULTS: Caregiving burden was linked to both patient (gender, age, past surgery or chemotherapy treatment, depression and impact of cancer-related symptoms) and caregiver variables (gender, family status, education, place of residence, previous experience of care, employment status, difficulty of caregiving, anxiety and depression). In multiple regression analyses, caregiving burden was significantly predicted by caregivers' depressed mood, perceived difficulty of caregiving, family status, employment status, as well as by patients' past surgery, in a model that explained 49% of the total variance. CONCLUSIONS: Greek family caregivers reporting greater depressive mood and difficulty with caregiving tasks, those married, those not employed, and those who cared for patients who had not undergone surgery were found at greater distress and disadvantage. Systematic assessment and intervention strategies are required to identify these vulnerable carers and help them cope when sharing in patient's cancer experience.

What is the value of the routine use of patient-reported outcome measures toward improvement of patient outcomes, processes of care, and health service outcomes in cancer care? A systematic review of controlled trials.

PURPOSE: The systematic use of patient-reported outcome measures (PROMs) has been advocated as an effective way to standardize cancer practice. Yet, the question of whether PROMs can lead to actual improvements in the quality of patient care remains under debate. This review examined whether inclusion of PROM in routine clinical practice is associated with improvements in patient outcomes, processes of care, and health service outcomes during active anticancer treatment. METHODS: A systematic review of five electronic databases (Medline, EMBASE, CINAHL [Cumulative Index to Nursing and Allied Health Literature], PsycINFO, and Psychology and Behavioral Sciences Collection [PBSC]) was conducted from database inception to May 2012 to locate randomized and nonrandomized controlled trials of patients receiving active anticancer treatment or supportive care irrespective of type of cancer. RESULTS: Based on prespecified eligibility criteria, we included 26 articles that reported on 24 unique controlled trials. Wide variability in the design and use of interventions delivered, outcomes evaluated, and cancer- and modality-specific context was apparent. Health service outcomes were only scarcely included as end points. Overall, the number of statistically significant findings were limited and PROMs' intervention effect sizes were predominantly small-to-moderate. CONCLUSION: The routine use of PROMs increases the frequency of discussion of patient outcomes during consultations. In some studies, PROMs are associated with improved symptom control, increased supportive care measures, and patient satisfaction. Additional effort is required to ensure patient adherence, as well as additional support to clinicians who will respond to patient concerns and issues, with clear system guidelines in place to guide their responses. More research is required to support PROM cost-benefit in terms of patient safety, clinician burden, and health services usage.

Patient-reported outcome measures for the identification of supportive care needs in people with lung cancer: are we there yet?

BACKGROUND: The use of patient-reported outcome measures is a method of identifying and addressing supportive care needs (SCN) of people with lung cancer, which are often overlooked. OBJECTIVE: The objectives of this study were to identify and evaluate existing SCN tools previously used in studies with patients with lung cancer and to establish their suitability for use in research and clinical practice. METHODS: A systematic search was carried out in the MEDLINE, CINAHL, EMBASE, PsychINFO, and British Nursing Index databases to locate studies conducted between January 2000 and November 2010 that made use of validated self-report SCN tools with patients with lung cancer. RESULTS: Twelve articles introducing 8 instruments met prespecified selection criteria. All tools were appraised for their content, comprehensiveness, appropriateness, psychometric properties, and feasibility and acceptability. Only 1 lung cancer-specific SCN tool was identified. Whereas the majority of tools had acceptable psychometric properties, only 1 tool had gone through a systematic development process specifically in the context of lung cancer. Therefore, it is questionable whether existing tools can adequately identify healthcare needs that people with lung cancer consider most important. CONCLUSIONS: To ensure that SCNs of people with lung cancer are adequately and promptly identified, rigorous development and systematic testing of content-specific SCN tools are warranted. IMPLICATIONS FOR PRACTICE: Collaborative work between patients with lung cancer, health professionals, and tool developers is required for an SCN tool not only to be content-specific but also to take into consideration the reality of clinical practice in providing supportive care to people with lung cancer.

A systematic review of supportive care needs of people living with lung cancer.

BACKGROUND AND PURPOSE: Supportive care for people living with a diagnosis of lung cancer is paramount. The purpose of this systematic review was to determine the supportive care needs of people with lung cancer, and explore trends and gaps in the assessment of these needs emerging from this literature. METHODS: Through use of a wide range "free text" terms, a systematic search of five electronic databases (Medline, CINAHL, EMBASE, PsychINFO and BNI) was carried out for the period between January 2000 and September 2012. Two validated scoring systems were used to appraise eligible studies for methodological quality and level of evidence. RESULTS: Based on pre-specified selection criteria, 59 articles (25 of quantitative methodology; 34 of qualitative methodology) reporting on 53 studies were retrieved and considered for further analysis. Overall, studies were of acceptable methodological quality. A wide spectrum of health care needs was evident among people with lung cancer. These needs were classified into nine domains: physical; daily living; psychological/emotional; spiritual/existential; informational; practical; patient-clinician communication; social and family-related; and cognitive. Daily living, practical, and cognitive needs were given less attention in this literature. CONCLUSIONS: People with lung cancer have a complex array of supportive care needs that impact on various life aspects. Yet, our knowledge still remains fragmentary. Embarking on new longitudinal exploratory studies and well-designed clinical trials is therefore strongly encouraged. The use of patient reported outcome measures as a clinical intervention tool may be viewed as a means of identifying and managing unmet needs in this patient population.