Transforming the oncology data paradigm by creating, capturing, and retrieving structured cancer data at the point of care: A Mayo Clinic pilot.

INTRODUCTION: Structured data capture requires defined languages such as minimal Common Oncology Data Elements (mCODE). This pilot assessed the feasibility of capturing 5 mCODE categories (stage, disease status, performance status (PS), intent of therapy and intent to change therapy). METHODS: A tool (SmartPhrase) using existing and custom structured data elements was Built to capture 4 data categories (disease status, PS, intent of therapy and intent to change therapy) typically documented as free-text within notes. Existing functionality for stage was supported by the Build. Participant survey data, presence of data (per encounter), and time in chart were collected prior to go-live and repeat timepoints. The anticipated outcome was capture of >50% sustained over time without undue burden. RESULTS: Pre-intervention (5-weeks before go-live), participants had 1390 encounters (1207 patients). The median percent capture across all participants was 32% for stage; no structured data was available for other categories pre-intervention. During a 6-month pilot with 14 participants across three sites, 4995 encounters (3071 patients) occurred. The median percent capture across all participants and all post-intervention months increased to 64% for stage and 81%-82% for the other data categories post-intervention. No increase in participant time in chart was noted. Participants reported that data were meaningful to capture. CONCLUSIONS: Structured data can be captured (1) in real-time, (2) sustained over time without (3) undue provider burden using note-based tools. Our system is expanding the pilot, with integration of these data into clinical decision support, practice dashboards and potential for clinical trial matching.

Perception of Polish patients with cancer of the ethical and legal issues related to biobank research.

BACKGROUND: Although biobanks have become fundamental to many research centers and contribute to medical development, they generate many ethical and legal issues that may discourage patients from donating. MATERIALS AND METHODS: To understand patients' perception of ethical and legal issues related to biobanks we conducted a survey among 548 Polish patients with cancer. RESULTS: While 93.1% of patients with cancer declared themselves willing to donate biospecimens left over after a medical procedure to a biobank, most opted for one-time consent or study-specific consent, blanket consent being less frequently preferred. Many patients believed that future use of previously collected tissues require second contact. Most patients preferred pseudonymization over anonymization of the data, and supported donors' right to withdraw informed consent at any given moment. Finally, while personal health information was the most expected form of compensation for donation, most patients suggested that all parties, including the biobank concerned, the sponsors of the research, and the donors, should own the rights to cancer tissues donated and profit from the biobank research. Patients' opinions on the ethical and legal issues related to biobank research were associated with age, sex, religiosity, education level, and place of residence. CONCLUSIONS: Since biobanks generate ethical and legal issues related to informed consent, data protection and storage, as well as the sharing of biosamples, tissue ownership, and profit sharing, that may discourage patients from donation, when asking a patient for a donation, healthcare professionals should communicate in a donor-centered manner and address patients' ethical and moral concerns related to donation and offer resources to help manage these concerns.

Financial toxicity in patients with cancer: a cross-sectional study at an oncology hospital in central Vietnam.

PURPOSE: Cancer imposes a substantial financial burden on patients because of the high out-of-pocket expenses and the significant hardships. Financial toxicity describes the impact of cancer care costs at the patient level. Although the financial impact of cancer has been recognized, understanding the extent and determinants of financial toxicity in specific contexts is crucial. This study investigated the level of financial toxicity and its associated factors among patients with cancer at an oncology hospital in central Vietnam. METHODS: This cross-sectional study included 334 patients with cancer. Direct interviews and medical record reviews were used for data collection. Financial toxicity was assessed using the 11-item Comprehensive Score for financial Toxicity (COST). A logistic regression model was used to determine factors associated with financial toxicity. RESULTS: A notable 87.7% of patients experienced financial toxicity due to cancer cost, with 37.7% experiencing mild financial toxicity and 49.7% suffering from moderate financial toxicity, 0.3% reporting severe financial toxicity. Individuals with low household income exhibited a higher proportion of financial toxicity compared to that of those with higher income (odds ratio (OR) = 5.78, 95% confidence interval (CI): 1.29-25.68). Compared with that of participants in the early stages, a higher burden was found in patients with advanced-stage cancer (OR = 3.88, 95% CI: 1.36-11.11). CONCLUSION: Our study indicates that patients with cancer in Vietnam facefinancial toxicity. It is thus necessary for interventions to mitigate the financial burden on patients with cancer, focusing on vulnerable individuals and patients in the advanced stages.

Exploration of helpful elements contributing to engage in physical activity in patients with cancer.

PURPOSE: Although there are many reported benefits of physical activity for patients with cancer (e.g., improving quality of life), many patients with cancer do not meet the recommendations of physical activity guidelines. The amount of physical activity declines after diagnosis of cancer. This study aimed to clarify the elements that contribute engagement in regular moderate-or-higher-level intensity of physical activity (MHPA), based on the Health Action Process Approach (HAPA), among patients with cancer. METHODS: Two web surveys were conducted among cancer outpatients, asking them to respond to a questionnaire. Participants provided information regarding their demographics, physical activity, purpose, advantages, disadvantages, barriers, triggers, and need for support for regular MHPA. RESULTS: Categories were obtained for purposes, advantages, disadvantages, barriers, triggers, and support needs for regular MHPA. For example, the support they considered necessary to regularly engage in MHPA were developed 9 categories, such as Improving the environment, Support for the implementation of PA (interpersonal), and Reducing the burden. Women and younger patients provided more statements about reducing their burden; younger patients also mentioned on improving the environment more among those who did not engage in MHPA. Additionally, patients with cancer who provided statements about interpersonal support reported higher barriers to physical activity. CONCLUSIONS: These findings will contribute to the development of a scale to measure the components of the HAPA on physical activity in patients with cancer. In addition, it will help develop a support system that promotes engagement in regular MHPA.

Examining clinical pharmacist interventions and identifying opioid medication-related issues in patients with cancer.

INTRODUCTION: Opioid medications are crucial for managing pain among patients with cancer. Yet, inappropriate prescribing and medication issues can compromise patient safety and quality of care. Clinical pharmacists play a significant role in optimizing opioid therapy and addressing issues related to opioid medication use. OBJECTIVES: This study aimed to examine clinical pharmacist interventions and identify opioid medication-related issues in patients with cancer. METHOD: We conducted a retrospective observational study at Shaukat Khanum Memorial Cancer Hospital and Research Center in Lahore, Pakistan, conducting a chart review from 1st July 2021 to 31st December 2021. RESULTS: Out of 10,534 opioid medication orders, we documented a total of 974 interventions based on our inclusion criteria. Tramadol and morphine accounted for most of these interventions, comprising 49.27% (n = 475) and 40.04% (n = 386), respectively. Regarding clinical significance, 41.70% (n = 406) were deemed significant, while 37.36% (n = 365) were somewhat significant. The majority of interventions, i.e., 54.05% (n = 521), primarily aimed at optimizing patient outcomes, followed by a secondary aim of improvements in communication, i.e., 25.52% (n = 246). CONCLUSION: This study establishes the evaluation of clinical pharmacist interventions on opioid medication use in patients with cancer, an issue particularly in oncology settings in Pakistan. The findings emphasize the crucial role of clinical pharmacists in addressing issues related to opioid issue medications, thus improving patient safety and optimizing opioid use for patient well-being.

Care quality and satisfaction at the cancer hospital - a questionnaire study of older patients with cancer and their family members.

BACKGROUND: The unique life situations of older patients with cancer and their family members requires that health care professionals take a holistic approach to achieve quality care. The aim of this study was to assess the perceptions of older patients with cancer and family members about the quality of care received and evaluate differences between their perceptions. A further aim was to examine which factors explain patients' and family members' levels of satisfaction with the care received. METHODS: The study was descriptive and cross-sectional in design. Data were collected from patients (n = 81) and their family members (n = 65) on four wards in a cancer hospital, using the Revised Humane Caring Scale (RHCS). Data were analysed using descriptive statistics, crosstabulation, Wilcoxon signed rank test, and multivariable Analysis of Covariance (ANCOVA). RESULTS: Family members had more negative perceptions of the quality of care than patients did. Dissatisfaction was related to professional practice (p < 0.001), interaction between patient and health care professionals (p < 0.001), cognition of physical needs (p = 0.024), and human resources (p < 0.001). Satisfaction with overall care was significantly lower among those patients and family members who perceived that they had not been involved in setting clear goals for the patient's care with staff (p = 0.002). CONCLUSIONS: It is important that older patients with cancer and family members receive friendly, respectful, individual care based on their needs and hopes, and that they can rely on professionals. Health care professionals need more resources and education about caring for older cancer patients to provide quality care.

Perceived communication efficacy and unmet needs for chemotherapy-associated symptom management in patients with lung and colorectal cancer: a cross-sectional study.

BACKGROUND: Understanding cancer patients' unmet needs for chemotherapy-related symptom management will assist clinicians in developing tailored intervention programs. Little is known about the association between perceived communication efficacy and unmet care needs for symptom management in patients with lung and colorectal cancer. OBJECTIVES: To examine the unmet care needs for symptom management of patients with lung and colorectal cancer and their association with perceived communication efficacy. METHODS: A cross-sectional survey was conducted in a tertiary hospital in China from July to November 2020. A convenience sample of 203 patients with lung and colorectal cancer undergoing chemotherapy completed survey questionnaires, including the MD Anderson Symptom Inventory Scale and the Perceived Efficacy in Patient‒Physician Interactions Scale. RESULTS: Approximately 43% of participants had at least one symptom with unmet needs. Fatigue was reported as the symptom with the highest occurrence (66%), the highest demand for supportive care (36%), and the highest prevalence of unmet needs (19%). Low levels of perceived communication efficacy independently predicted participants' unmet needs for symptom management (ß=-0.13, p = 0.011). CONCLUSIONS: This study highlights the necessity of introducing clinical assessment tools and guidelines to address fatigue and other chemotherapy-induced symptoms in patients with lung and colorectal cancer. Clinical programs designed to actively engage cancer patients to voice their needs and strengthen their communication efficacy are also warranted.

Intensive Longitudinal Methods Among Adults With Breast or Lung Cancer: Scoping Review.

BACKGROUND: Intensive longitudinal methods offer a powerful tool for capturing daily experiences of individuals. However, its feasibility, effectiveness, and optimal methodological approaches for studying or monitoring experiences of oncology patients remain uncertain. OBJECTIVE: This scoping review aims to describe to what extent intensive longitudinal methods with daily electronic assessments have been used among patients with breast or lung cancer and with which methodologies, associated outcomes, and influencing factors. METHODS: We searched the electronic databases (PubMed, Embase, and PsycINFO) up to January 2024 and included studies reporting on the use of these methods among adults with breast or lung cancer. Data were extracted on population characteristics, intensive monitoring methodologies used, study findings, and factors influencing the implementation of these methods in research and clinical practice. RESULTS: We identified 1311 articles and included 52 articles reporting on 41 studies. Study aims and intensive monitoring methodologies varied widely, but most studies focused on measuring physical and psychological symptom constructs, such as pain, anxiety, or depression. Compliance and attrition rates seemed acceptable for most studies, although complete methodological reporting was often lacking. Few studies specifically examined these methods among patients with advanced cancer. Factors influencing implementation were linked to both patient (eg, confidence with intensive monitoring system) and methodology (eg, option to use personal devices). CONCLUSIONS: Intensive longitudinal methods with daily electronic assessments hold promise to provide unique insights into the daily lives of patients with cancer. Intensive longitudinal methods may be feasible among people with breast or lung cancer. Our findings encourage further research to determine optimal conditions for intensive monitoring, specifically in more advanced disease stages.

A bibliometric analysis of studies on death anxiety in patients with cancer.

Purpose: This study evaluates the evolution and focal points of research on death anxiety among cancer patients over the last three decades, utilizing bibliometric analyses.Methods: We analyzed publications related to death anxiety among cancer patients from January 1994 to January 2024 using data from the Web of Science Core Collection. Bibliometric indicators such as the number of publications, leading countries, institutions, and research themes were examined.Results: A total of 2,602 papers from 286 institutions across 97 countries were identified. There has been a significant increase in research interest, particularly between 2014 and 2023, with a peak in 2022. The United States and Harvard University were found to be the most prolific contributors. Major research themes include quality of life, palliative care, mental health, and cancer-specific concerns.Conclusion: The results highlight the rapid development in the field of death anxiety research among cancer patients, with an increase in publications and emerging research themes. However, there is limited international and institutional collaboration. The study underscores the need for enhanced cooperative efforts to advance understanding and research in this area, suggesting directions for future research.

Exploring nurses' experiences of providing spiritual care to cancer patients: a qualitative study.

PURPOSE: This study aims to explore nurses' experiences of delivering spiritual care in an oncology setting. METHODS: An exploratory- descriptive qualitative design. Focus groups were conducted to gather data. The discussions were recorded and transcribed verbatim to ensure accuracy, credibility, and reliability. Inductive thematic analysis was performed to analyze the narratives, and the study's reporting followed the Consolidated criteria for reporting qualitative studies. RESULTS: The study revealed four major themes: the spirituality from the perspective of oncology nurses, recognition of patients' spiritual needs, delivery of spiritual care to patients with cancer, and barriers in implementing spiritual care. The participants identified insufficient staff, lack of time, and insufficient knowledge and skills as obstacles to delivering spiritual care. CONCLUSION: This study offers a thorough understanding of how nurses provide spiritual care in an oncology setting. It is recommended that organizational interventions, such as increasing staff numbers, be implemented to enable nurses to provide more compassionate care. Furthermore, nursing curriculums should incorporate purposeful engagement and focused debriefing related to spiritual care to better equip nurses in identifying and meeting the spiritual needs of their patients.

Dyadic sleep intervention for adult patients with cancer and their sleep-partner caregivers: A feasibility study.

OBJECTIVES: Sleep disturbances are common among adult patients with cancer and their caregivers. To our knowledge, no sleep intervention to date has been designed to be provided to both patients with cancer and their caregivers simultaneously. This single-arm study aimed to pilot test the feasibility and acceptability, and to illustrate the preliminary efficacy on sleep efficiency of the newly developed dyadic sleep intervention, My Sleep Our Sleep (MSOS: NCT04712604). METHODS: Adult patients who were newly diagnosed with a gastrointestinal (GI) cancer and their sleep-partner caregivers (n = 20 persons: 10 dyads, 64 years old, 60% female patients, 20% Hispanic, 28 years relationship duration), both of whom had at least mild levels of sleep disturbance (Pittsburgh Sleep Quality Index [PSQI] ≥ 5) participated in this study. MSOS intervention consists of four 1-hour weekly sessions delivered using Zoom to the patient-caregiver dyad together. RESULTS: We were able to enroll 92.9% of the eligible and screened patient-caregiver dyads within 4 months. Participants reported high satisfaction in 8 domains (average 4.76 on a 1-5 rating). All participants agreed that the number of sessions, interval (weekly), and delivery mode (Zoom) were optimal. Participants also preferred attending the intervention with their partners. Both patients and caregivers showed improvement in sleep efficiency after completing the MSOS intervention: Cohen's d = 1.04 and 1.47, respectively. SIGNIFICANCE OF RESULTS: Results support the feasibility and acceptability, as well as provide the preliminary efficacy of MSOS for adult patients with GI cancer and their sleep-partner caregivers. Findings suggest the need for more rigorous controlled trial designs for further efficacy testing of MSOS intervention.

Place of Death for Israeli Cancer Patients Over a 20-Year Period: Reducing Hospital Deaths, but Barriers Remain.

BACKGROUND: Cancer remains a leading cause of mortality worldwide. While the main focus of palliative care (PC) is quality of life, the elements that comprise the quality of death are often overlooked. Dying at home, with home-hospice-care (HHC) support, rather than in-hospital, may increase patient satisfaction and decrease the use of invasive measures. We examined clinical and demographic characteristics associated with out-of-hospital death among patients with cancer, which serves as a proxy measure for HHC deaths. METHODS: Using death certification data from the Israel Central Bureau of Statistics, we analyzed 209,158 cancer deaths between 1998 and 2018 in Israel including demographic information, cause of death, and place of death (POD). A multiple logistic regression model was constructed to identify factors associated with out-of-hospital cancer deaths. RESULTS: Between 1998 and 2018, 69.1% of cancer deaths occurred in-hospital, and 30.8% out-of-hospital. Out-of-hospital deaths increased by 1% annually during the study period. Older patients and those dying of solid malignancies were more likely to die out-of-hospital (OR = 2.65, OR = 1.93, respectively). Likelihood of dying out-of-hospital varied with area of residency; patients living in the Southern district were more likely than those in the Jerusalem district to die out-of-hospital (OR = 2.37). CONCLUSION: The proportion of cancer deaths occurring out-of-hospital increased during the study period. We identified clinical and demographic factors associated with POD. Differences between geographical areas probably stem from disparity in the distribution of PC services and highlight the need for increasing access to primary EOL care. However, differences in age and tumor type probably reflect cultural changes and suggest focusing on educating patients, families, and physicians on the benefits of PC.

Posttraumatic Stress Symptoms in Patients With Cancer During the COVID-19 Pandemic: A One-Year Longitudinal Study.

BACKGROUND: Patients with cancer may be particularly vulnerable to psychological consequences of the COVID-19 pandemic. We studied the prevalence and evolution of posttraumatic stress symptoms (PTSS) in patients with cancer during the pandemic waves, and we investigated factors associated with high symptoms. METHODS: COVIPACT is a 1-year longitudinal prospective study of French patients with solid/hematologic malignancies receiving treatment during the first nationwide lockdown. PTSS were measured every 3 months from April 2020 using the Impact of Event Scale-Revised. Patients also completed questionnaires on their quality of life, cognitive complaints, insomnia, and COVID-19 lockdown experience. RESULTS: Longitudinal analyses involved 386 patients with at least one PTSS assessment after baseline (median age, 63 years; 76% female). Among them, 21.5% had moderate/severe PTSS during the first lockdown. The rate of patients reporting PTSS decreased at lockdown release (13.6%), increased again at second lockdown (23.2%), and slightly declined from the second release period (22.7%) to the third lockdown (17.5%). Patients were grouped into 3 trajectories of evolution. Most patients had stable low symptoms throughout the period, 6% had high baseline symptoms slowly decreasing over time, and 17.6% had moderate symptoms worsening during the second lockdown. Female sex, feeling socially isolated, worrying about COVID-19 infection, and using psychotropic drugs were associated with PTSS. PTSS were associated with impaired quality of life, sleep, and cognition. CONCLUSIONS: Approximately one-fourth of patients with cancer experienced high and persistent PTSS over the first year of the COVID-19 pandemic and may benefit from psychological support. CLINICALTRIALS: gov identifier: NCT04366154.

Analysis of the influential factors of the emotional health of patients with cancer based on the structural equation model: the role of social media and emotional support.

PURPOSE: To explore the mental health status of patients with cancer and related influential factors and provide a scientific basis to reduce serious emotional problems, improve the quality of life of cancer survivors and adopt targeted interventions. METHODS: A total of 517 patients who attended the oncology departments of six grade-A tertiary hospitals from July 2022 to September 2022 were selected by convenience sampling. The effects of emotional support, social media, patient-centred communication, health self-efficacy and cancer beliefs on the emotional well-being of patients with cancer were analysed based on the structural equation model. RESULTS: A Spearman correlation analysis showed a significant positive correlation among the six latent variables (P<0.01). The structural equation model path analysis showed that health self-efficacy (ß=0.374, P<0.001), cancer belief (ß=0.214, P=0.003) and emotional support (ß=0.104, P=0.031) all had positive effects on emotional health. The mediating effect results showed that cancer beliefs had a mediating effect on mental health in social media use (ß=0.106, P=0.001), emotional support (ß=0.028, P=0.002) and patient-centred communication (ß=0.050, P=0.002). Further, health self-efficacy had mediating effects on mental health in emotional support (ß=0.084, P=0.001) and patient-centred communication (ß=0.098, P=0.001). CONCLUSION: By constructing structural equation models, this study found that emotional support, cancer beliefs and health self-efficacy showed a positive effect on the emotional well-being of patients with cancer. Further, it found a mediating role of health cancer beliefs on the impact of emotional support, social media use and patient-centred communication on mental health. Additionally, health self-efficacy has a mediating role regarding the effects of emotional support and patient-centred communication on mental health.

Financial toxicity assessment and associated factors analysis of patients with cancer in China.

PURPOSE: Cancer-related expenditures present a lasting economic burden on patients and their families and may exert long-term adverse effects on the patients' life and quality of life. In this study, the comprehensive score for financial toxicity (COST) was used to investigate the financial toxicity (FT) levels and related risk factors in Chinese patients with cancer. METHODS: Quantitative data were collected through a questionnaire covering three aspects: sociodemographic information, economic and behavioral cost-coping strategies, and the COST scale. Univariate and multivariate analyses were performed to identify factors associated with FT. RESULTS: According to 594 completed questionnaires, the COST score ranged 0-41, with a median of 18 (mean±SD, 17.98±7.978). Over 80% of patients with cancer reported at least moderate FT (COST score <26). A multivariate model showed that urban residents, coverage by other health insurance policies, and higher household income and consumption expenditures were significantly associated with higher COST scores, indicative of lower FT. The middle-aged (45-59 years old), higher out-of-pocket (OOP) medication expenditures and hospitalizations, borrowed money, and forgone treatment were all significantly associated with lower COST scores, indicating higher FT. CONCLUSION: Severe FT was associated with sociodemographic factors among Chinese patients with cancer, family financial factors, and economic and behavioral cost-coping strategies. Government should identify and manage the patients with high-risk characteristics of FT and work out better health policies for them.

Long-term risks of cardiovascular death in a population-based cohort of 1,141,675 older patients with cancer.

BACKGROUND: previous studies have focused on the risk of cardiovascular disease (CVD)-related death in individual cancers, adolescents or all cancers. OBJECTIVE: to evaluate the risk of CVD-related death in older patients with cancer. METHODS: older patients with cancer (over 65 years) of 16 cancers diagnosed between 1975 and 2018 were screened out from the Surveillance, Epidemiology and End Results program. The proportion of deaths, competing risk regression models, standardized mortality ratios (SMRs) and absolute excess risks (AERs) were used to assess the risk of CVD-related death. RESULTS: this study included 1,141,675 older patients (median follow-up: 13.5 years). Of the 16 individual cancers, the risk of CVD death exceeded primary neoplasm death in older patients with cancers of the breast, endometrium, vulva, prostate gland, penis and melanoma of the skin over time (high competing risk group). Compared to the general older population, older patients with cancer had higher SMR and AER of CVD-related death (SMR: 1.58-4.23; AER: 21.16-365.89), heart disease-related death (SMR: 1.14-4.16; AER: 16.29-301.68) and cerebrovascular disease-related death (SMR: 1.11-4.66; AER: 3.02-72.43), with the SMR trend varying with CVD-related death competing risk classifications. The risk of CVD-related death in the high-competing risk group was higher than in the low-competing risk group. CONCLUSIONS: for older patients with cancer, six of 16 individual cancers, including breast, endometrium, vulva, prostate gland, penis and melanoma of the skin was at high risk of CVD-related death. Management for long-term cardiovascular risk in older patients with cancer is needed.

Evaluation of factors predicting the benefit from systemic oncological treatment for severely ill hospitalized patients: a retrospective study.

BACKGROUND: Patients with cancer in the disease's end-stage with poor performance represent a challenging clinical scenario, as they have high chance of a fatal outcome due to clinical conditions, oncological emergencies, and/or metastatic disease. This study examines the factors predicting the potential benefit of "urgent" chemotherapy during hospitalization in this setting, thus addressing a research gap. METHODS: This retrospective observational study was conducted in the largest cancer center in the outskirts of São Paulo. It identified factors predicting the benefit from antineoplastic treatment in severe in-hospital patients admitted during 2019-2020, considering post-chemotherapy survival time as the main dependent variable. Data were retrieved from medical records. All patients aged ≥ 18 years, with an ECOG-PS score ≥ 2, and undergoing non-elective systemic cancer treatment were included. RESULTS: This study evaluated 204 records, of which 89 were included in the final analysis. A statistically significant association with the worse outcome (death within 30 days of chemotherapy) was found with higher ECOG performance status; chemotherapy dose reduction; lower values of serum albumin, hemoglobin, and creatinine clearance; and higher values of leukocytes, neutrophils, direct bilirubin, urea, and C-reactive protein. In the multivariate analysis, only albumin remained statistically associated with the outcome (hazard ratio = 0.35; confidence interval: 0.14, 0.90; p = 0.034). CONCLUSIONS: Serum albumin and other clinical and laboratory variables might be associated with early post-treatment deaths in patients with cancer. The study data might help guide the decision to administer systemic treatment in this scenario and manage critically ill patients. This study adds to our knowledge of the factors predicting the objective benefits from "heroic" or "urgent" chemotherapy for hospitalized and severely ill patients with cancer.

Intentions of Patients With Cancer and Their Relatives to Use a Live Chat on Familial Cancer Risk: Results From a Cross-Sectional Web-Based Survey.

BACKGROUND: An important prerequisite for actively engaging in cancer prevention and early detection measures, which is particularly recommended in cases of familial cancer risk, is the acquisition of information. Although a lot of cancer information is available, not all social groups are equally well reached because information needs and communicative accessibility differ. Previous research has shown that a live chat service provided by health professionals could be an appropriate, low-threshold format to meet individual information needs on sensitive health topics such as familial cancer risk. An established German Cancer Information Service is currently developing such a live chat service. As it is only worthwhile if accepted by the target groups, formative evaluation is essential in the course of the chat service's development and implementation. OBJECTIVE: This study aimed to explore the acceptance of a live chat on familial cancer risk by patients with cancer and their relatives (research question [RQ] 1) and examine the explanatory power of factors associated with their intentions to use such a service (RQ2). Guided by the Extended Unified Theory of Acceptance and Use of Technology (UTAUT2), we examined the explanatory power of the following UTAUT2 factors: performance expectancy, effort expectancy, social influence, facilitating conditions, and habit, supplemented by perceived information insufficiency, perceived susceptibility, perceived severity, and cancer diagnosis as additional factors related to information seeking about familial cancer. METHODS: We conducted a cross-sectional survey via a German web-based access panel in March 2022 that was stratified by age, gender, and education (N=1084). The participants are or have been diagnosed with cancer themselves (n=144) or have relatives who are or have been affected (n=990). All constructs were measured with established scales. To answer RQ1, descriptive data (mean values and distribution) were used. For RQ2, a blockwise multiple linear regression analysis was conducted. RESULTS: Overall, 32.7% of participants were (rather) willing, 28.9% were undecided, and 38.4% were (rather) not willing to use a live chat on familial cancer risk in the future. A multiple linear regression analysis explained 47% of the variance. It revealed that performance expectancy, social influence, habit, perceived susceptibility, and perceived severity were positively associated with the intention to use a live chat on familial cancer risk. Effort expectancy, facilitating conditions, information insufficiency, and cancer diagnosis were not related to usage intentions. CONCLUSIONS: A live chat seems promising for providing information on familial cancer risk. When promoting the service, the personal benefits should be addressed in particular. UTAUT2 is an effective theoretical framework for explaining live chat usage intentions and does not need to be extended in the context of familial cancer risk.

Social connectedness and health-related quality of life among patients with cancer undergoing chemotherapy: A mixed method approach using structural equation modelling and photo-elicitation.

OBJECTIVE: To develop and test the model of association of social connectedness and health-related quality of life (HRQoL) among patients with cancer undergoing chemotherapy and to describe their social connectedness through photo-elicitation. BACKGROUND: Social connectedness has been empirically associated with several well-being outcomes. However, little is known on the association of social connectedness among patients with cancer undergoing chemotherapy. METHODS: Employing a mixed-methods design following the good reporting of a mixed methods study guideline, the quantitative approach involved 230 consecutively-selected patients with cancer undergoing chemotherapy who answered a three-part survey. From these patients, six informants participated in the photo-elicitation and key informant interview sessions. Gathered data were quantitatively analyzed using structural equation modelling and qualitatively processed using polytextual thematic analysis. RESULTS AND FINDINGS: Social connectedness had a positive influence on social well-being (ß = .22, p = .008) and emotional well-being (ß = .20, p = .023); however, it had a negative effect on functional well-being (ß = -.20, p = .007). The overall model revealed good model indices: χ2 /df = .82, RMSEA = .01, GFI = 1.00. Qualitative analysis culled from photo-elicitation uncovered five interconnected themes yielding the Honeycomb model of social connectedness which was composed of correspondence, cohesion, constitution, convergence and corroboration. CONCLUSION: HRQoL among patients with cancer undergoing chemotherapy is a multi-factorial health construct affected by social connectedness. The presented model emphasises the importance of social connectedness and paves way for the development of appropriate strategies to promote social connectedness among patients with cancer undergoing chemotherapy. RELEVANCE TO CLINICAL PRACTICE: The findings provide impetus in the modification and development of appropriate practices, policies and strategies in promoting social connectedness. These approaches are geared towards patient-family empowerment and health education techniques to ascertain that assistance from significant others is provided without limiting the patient's autonomy or independence.

[The Moderating Effect of Veteran Status on the Relationship Between Fatigue and Sleep Disturbance in Primary Caregivers of Patients With Cancer].

BACKGROUND: Fatigue may lead to disordered sleep. Primary caregivers of patients with cancer may suffer from higher levels of disordered sleep because of care-related fatigue. Older-adult veterans with cancer tend to be emotionally negative, which increases the challenges of care. PURPOSE: This study was designed to investigate the veteran status of patients as a possible moderator in the relationship between fatigue and disordered sleep in primary caregivers. METHODS: In this cross-sectional study, 127 primary caregivers of patients with cancer were randomly recruited from three hospitals in northern Taiwan. Data were collected using a demographics datasheet, the Taiwanese version of the Brief Fatigue Inventory, and the Chinese version of the Pittsburgh Sleep Quality Index. Descriptive statistics, independent t-tests, one-way ANOVA, Pearson correlation analyses, and hierarchical regression analyses were used to analyze the obtained data. RESULTS: Fatigue in the participants was shown to correlate significantly and positively with their sleep quality (r = .632, p < .01), with fatigue found to affect sleep quality positively (ß = .472, p < .001). The regression analyses showed the explanatory power of fatigue on sleep disorders (b = .148, p < .001) to be higher in caregivers of veteran patients than in caregivers of non-veteran patients (b = .091, p < .001). CONCLUSIONS / IMPLICATIONS FOR PRACTICE: Veteran patient status may moderate the relationship between fatigue and disordered sleep in primary caregivers. Nurses should assess caregiver fatigue status and offer appropriate resources.