Nurse-led proactive mobile application in symptom management for children with medical complexity: Study protocol for a randomized controlled trial.

AIM: To investigate the effect of a nurse support using a proactive mobile app to enhance parental self-efficacy in symptom management for children with medical complexity. DESIGN: A single-blinded, randomized controlled trial with a two-armed repeated measures design. METHODS: Eligible parents and the children will be recruited from the special schools and non-government offices. They will be randomly assigned either to the intervention or control groups. Subjects in the study group will receive nurse parental support using a symptom management mobile app for 3 months. The control group will receive the usual care that is available in the community. Data will be collected pre-intervention (T1), immediately after the intervention (T2), and three-month after intervention (T3). The primary outcome is parental self-efficacy. The secondary outcomes include child's symptom burden and their health service utilization. Primary outcome will be compared across two groups in T2 and T3 using with control for the pre-test value of parental self-efficacy. Generalized estimating equation (GEE) will be used to address secondary objectives from T1 to T3 with appropriate link function. DISCUSSION: As a result of the successful implementation of this nurse-led symptom management, parental self-efficacy will be enhanced. Both the symptoms reported by the children and their health service utilization will be reduced. Findings of this study will help in service delivery improvements because it maximizes the availability and accessibility of paediatric health service to parents and the children in local communities. IMPACT: The evidence produced in this study will enlarge the knowledge base that supports evidence-based paediatric home nursing service with the use of health technology in symptom management. This evidence will also contribute to the development of other symptom management programs for other paediatric patient groups. TRIAL REGISTRATION: NCT05765643 (ClinicalTrials.gov identifier). PATIENT OR PUBLIC CONTRIBUTION: Parents of children with medical complexity contributed in mobile application development by giving comments on the usability of mobile application. IMPACT WILL BE GENERATED THROUGH THE FOLLOWING BENEFITS: Improve health service delivery: Home nursing service may not be sustainable in a long run in Hong Kong, as the health care system has been facing a serious nursing workforce shortage in recent years. Besides, these services are affected or even suspended during the community outbreak of infectious disease, like recent coronavirus disease pandemic. Nurse parental support in symptom management for the CMC using a proactive mobile health application will help in service delivery improvements because it maximizes the availability and accessibility of paediatric health service to parents and their CMC in local communities. Improve physical and psychological health of parents and their CMC: The success of program implementation will help to increase parental self-efficacy in symptom management for their CMC, as a result of decrease of children's symptom burden. Improve knowledge base: The evidence produced in this study will (1) enlarge the knowledge base that supports evidence-based paediatric community nursing service related to symptom management for the CMC. This evidence will contribute to the development of other symptom management programs for other paediatric patient groups.

Clinical Benefits and Safety of Medical Cannabis Products: A Narrative Review on Natural Extracts.

Interest in medical cannabis and cannabis-based medicinal products (CBMPs) has increased greatly in recent years. Two cannabinoids are of principal importance; delta-9-tetrahydrocannabinol (∆9-THC), the primary psychoactive component, and also cannabidiol (CBD), considered non-intoxicating. Each has distinct mechanisms of action and different therapeutic potentials. CBMPs differ in their ∆9-THC and CBD components; predominantly ∆9-THC, balanced formulations with equivalent ∆9-THC and CBD elements, and CBD-predominant products. In this narrative review, we evaluate the published evidence for the clinical benefits of CBMPs and overall benefits in well-being. We also review the overall safety profile and discuss the potential for dependence with CBMPs. Evidence can be drawn from a wide range of randomized and other controlled studies and from observational real-world studies. Most data from observational registry studies are supportive of ∆9-THC-based products (∆9-THC-predominant or balanced CBMPs) in the management of chronic neuropathic pain. Balanced products are also effective in reducing spasticity in multiple sclerosis. Most CBMPs show benefit in providing symptomatic benefits in reducing anxiety, nausea, and in improving sleep, but the place of specific products is more subtle, and choice guided by specific circumstances. Symptomatic improvements are accompanied by improved quality of life and well-being. Safety data indicate that CBMPs are generally well tolerated in most patients without specific contraindications. The majority of adverse effects are non-serious, and transient; most are principally associated with ∆9-THC and are dose-dependent. In contrast to recreational cannabis use, there is little evidence from clinical studies that CBMPs have any potential for dependence.

Estimating the prevalence of mental disorders in patients with newly diagnosed cancer in relation to socioeconomic status: a multicenter prospective observational study.

BACKGROUND: The purpose of this study was to provide the 4-week prevalence estimates of mental disorders in newly diagnosed cancer patients in relation to socioeconomic status (SES). PATIENTS AND METHODS: We enrolled newly diagnosed patients with a confirmed solid tumor within 2 months of diagnosis. We calculated patients' SES on the basis of their educational level, professional qualification, income and occupational status. We used the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition-Clinical Version (SCID-5-CV) to assess the 4-week prevalence of mental disorders in addition to a comorbidity questionnaire to assess the level of physical impairment. RESULTS: We identified a total of 1702 patients with mixed cancers after reviewing their medical records and contacting them in person or by post due to coronavirus pandemic patient safety restrictions. 1030 patients (53.2% men, mean age 60.2 years) had completed SCID-5-CV. When weighted according to the SES distribution to account for over- and under-sampling of SES groups, 20.9% [95% confidence interval (CI) 18.1% to 23.6%] of patients were diagnosed with any mental disorder. The most prevalent were depressive disorders (9.9%, 95% CI 7.9% to 11.9%), trauma and stress-related disorders (6.3%, 95% CI 4.7% to 7.9%) and anxiety disorders (4.2%, 95% CI 2.9% to 5.6%). We found no difference in any mental disorder between patients with high, medium or low SES. Multivariate logistic regression analyses revealed higher proportion of patients with any mental disorder in patients younger than 60 years [odds ratio (OR) 0.42; P < 0.001], in patients without a partner (OR 1.84; P < 0.001), in women with tumor in female genital organs (OR 2.45; P < 0.002) and in those with a higher level of impairment (OR 1.05, 95% CI 1.03-1.07; P < 0.001). CONCLUSIONS: SES had no significant influence on mental comorbidity in early cancer survivorship.

Intensive care unit interventions to improve quality of dying and death: scoping review.

BACKGROUND: Intensive care units (ICUs) have mortality rates of 10%-29% owing to illness severity. Postintensive care syndrome-family affects bereaved relatives, with a prevalence of 26% at 3 months after bereavement, increasing the risk for anxiety and depression. Complicated grief highlights issues such as family presence at death, inadequate physician communication and urgent improvement needs in end-of-life care. However, no study has comprehensively reviewed strategies and components of interventions to improve end-of-life care in ICUs. AIM: This scoping review aimed to analyse studies on improvement of the quality of dying and death in ICUs and identify interventions and their evaluation measures and effects on patients. METHODS: MEDLINE, CINAHL, PsycINFO and Central Journal of Medicine databases were searched for relevant studies published until December 2023, and their characteristics and details were extracted and categorised based on the Joanna Briggs model. RESULTS: A total of 24 articles were analysed and 10 intervention strategies were identified: communication skills, brochure/leaflet/pamphlet, symptom management, intervention by an expert team, surrogate decision-making, family meeting/conference, family participation in bedside rounds, psychosocial assessment and support for family members, bereavement care and feedback on end-on-life care for healthcare workers. Some studies included alternative assessment by family members and none used patient assessment of the intervention effects. CONCLUSION: This review identified 10 intervention strategies to improve the quality of dying and death in ICUs. Many studies aimed to enhance the quality by evaluating the outcomes through proxy assessments. Future studies should directly assess the quality of dying process, including symptom evaluation of the patients.

A bio-behavioral model of systemic inflammation at breast cancer diagnosis and fatigue of clinical importance two years later.

BACKGROUND: We aimed to generate a model of cancer-related fatigue (CRF) of clinical importance two years after diagnosis of breast cancer building on clinical and behavioral factors and integrating pre-treatment markers of systemic inflammation. METHODS: Women with stage I-III HR+/HER2- breast cancer were included from the multimodal, prospective CANTO cohort (NCT01993498). The primary outcome was global CRF of clinical importance (EORTC QLQ-C30≥40/100) two years after diagnosis (year-2). Secondary outcomes included physical, emotional, and cognitive CRF (EORTC QLQ-FA12). All pre-treatment candidate variables were assessed at diagnosis, including inflammatory markers (interleukin [IL]-1a, IL-1b, IL-2, IL-4, IL-6, IL-8, IL-10, interferon gamma, IL-1 receptor antagonist, TNF-α, and C-reactive protein), and were tested in multivariable logistic regression models implementing multiple imputation and validation by 100-fold bootstrap resampling. RESULTS: Among 1208 patients, 415 (34.4%) reported global CRF of clinical importance at year-2. High pre-treatment levels of IL-6 (Quartile 4 vs.1) were associated with global CRF at year-2 (adjusted Odds Ratio [aOR]: 2.06 [95% Confidence Interval 1.40-3.03]; p=0.0002; AUC=0.74). Patients with high pre-treatment IL-6 had unhealthier behaviors, including being frequently either overweight or obese (62.4%; mean BMI 28.0 [SD 6.3] Kg/m2) and physically inactive (53.5% did not meet WHO recommendations). Clinical and behavioral associations with CRF at year-2 included pre-treatment CRF (aOR vs no: 3.99 [2.81-5.66]), younger age (per 1-year decrement: 1.02 [1.01-1.03]), current smoking (vs never: 1.81 [1.26-2.58]), and worse insomnia or pain (per 10-unit increment: 1.08 [1.04-1.13], and 1.12 [1.04-1.21], respectively). Secondary analyses indicated additional associations of IL-2 (aOR per log-unit increment:1.32 [CI 1.03-1.70]) and IL-10 (0.73 [0.57-0.93]) with global CRF and of C-reactive protein (1.42 [1.13-1.78]) with cognitive CRF at year-2. Emotional distress was consistently associated with physical, emotional, and cognitive CRF. CONCLUSIONS: This study proposes a bio-behavioral framework linking pre-treatment systemic inflammation with CRF of clinical importance two years later among a large prospective sample of survivors of breast cancer.

Longitudinal Analysis of Cancer Family Caregiver Perception of Sleep Difficulty During Home Hospice.

BACKGROUND: Sleep difficulty in caregivers is associated with poor physical and psychological outcomes. The purpose of this study was to describe family caregivers' perception of sleep difficulty through the hospice trajectory after a cancer diagnosis as predicted by age, sex, self-report of anxiety or depression, and cohabitation. METHODS: We conducted a secondary analysis of longitudinal data using multilevel modeling with nested model comparisons. Beginning with an unconditional growth model, predictors were added to nested models to test differential impact. RESULTS: Caregivers (n = 164) were predominately white (n = 160; 97%) and female (n = 113, 69%). We hypothesized that age, sex, history of anxiety or depression, and cohabitation would predict sleep difficulty. The cohabitation predictor model was a statistically significant model for caregiver perception of sleep difficulty that worsened throughout hospice caregiving (b = .184, χ2 = 7.199, P = 0.027) but age, sex, and history of depression or anxiety did not improve model fit. CONCLUSION: Our findings indicate that family caregivers who cohabitate exhibit increased perception of sleep difficulty over the course of hospice. Future studies and interventions for hospice family caregivers' sleep should consider cohabitation between the patient and the caregiver as a significant predictor of sleep difficulty to observe and potentially mediate the negative outcomes associated with caregiver sleep difficulty. Further, determining the underlying reasons for sleep difficulty in cohabitation (e.g., patient symptoms or treatments) should be explored.

A sequential multiple assignment randomized trial of symptom management for cancer survivors during treatment and their informal caregivers.

CONTEXT: Many cancer survivors and their informal caregivers experience multiple symptoms during the survivor's treatment. OBJECTIVE: Test relative effectiveness and optimal sequencing of two evidence-based interventions for symptom management. METHODS: In this sequential multiple assignment randomized trial (SMART), survivors of solid tumors with elevated depression or anxiety and their caregivers as dyads were initially randomized after baseline assessment in a 3:1 ratio to the Symptom Management and Survivorship Handbook (SMSH, N = 277 dyads) intervention or SMSH plus 8 weeks of telephone interpersonal counseling (TIPC, N = 97 dyads). After 4 weeks, survivors who were not responding (no improvement or worsening score on depression and/or anxiety item) to SMSH only and their caregivers were re-randomized to continue with SMSH alone (N = 44 dyads) to give it more time or to SMSH + TIPC (N = 44 dyads). Mixed effects and generalized linear models compared severity of depression, anxiety, and a summed index of 16 other symptoms over weeks 1-13 and week 17 between randomized groups and among three dynamic treatment regimes (DTRs). Dyads received SMSH only for 12 weeks (DTR1); SMSH for 12 weeks with 8 weeks of TIPC added from week 1 (DTR2); and SMSH for 4 weeks followed by the combined SMSH + TIPC for 8 weeks if no response at 4 weeks (DTR3). RESULTS: Survivors randomized initially to SMSH alone had significantly lower anxiety over weeks 1-13 compared to those randomized to the combined SMSH + TIPC. In comparing DTRs, survivor's anxiety was significantly lower at week 13 for DTR1 compared to DTR2 with no other main effects for survivors or caregivers. Exploratory moderation analyses indicated a potential benefit of adding TIPC for caregivers of non-responders with elevated baseline symptoms. CONCLUSION: SMSH + TIPC did not result in better symptom outcomes at week 17 than SMSH alone. Lower intensity SMSH may improve depression and anxiety symptoms for most survivors and their caregivers. TRIAL REGISTRATION: Clinicaltrails.gov ID number, NCT03743415; approved and posted on 11/16/2018.

Overactive bladder symptoms experiences of diabetic women in Türkiye: A qualitative study.

In diabetic patients, poor management of hyperglycemia and prolonged disease duration may lead to neuropathy-related overactive bladder (OAB) symptoms. To effectively manage OAB symptoms in women with type 2 diabetes, it is essential to know how patients perceive these problems, their lives, and strategies. This study aimed to understand the experience of OAB symptoms in Turkish women with type 2 diabetes from their point of view. A qualitative descriptive design was adopted with individual, semi-structured interviews. Participants were selected by purposive sampling. The data were evaluated by using Van Manen's thematic analysis method. The symptom management theory formed the conceptual framework of this study. The Consolidated Criteria for Reporting Qualitative Research checklist was used. A total of 18 patients were recruited and individually interviewed. Semi-structured interviews were conducted from May to August 2023. The three main themes emerged: (i) the meaning of OAB symptoms; (ii) difficulties caused by OAB symptoms; and (iii) coping with OAB symptoms. The subthemes included the negative effects of OAB symptoms on daily life, difficulties in physical, psychological, and sexual life, and positive and negative behavior in coping with OAB symptoms. OAB symptoms affect the physical, psychosocial, and sexual lives of women with type 2 diabetes. Women with type 2 diabetes try to cope in different ways but often do not receive the support they need from families. Therefore, nurses should integrate the urinary problems of women with type 2 diabetes into routine clinical assessments and provide counseling to women.

Topical menthol for chemotherapy-induced peripheral neuropathy: a randomised controlled trial in breast cancer.

OBJECTIVES: Chemotherapy-induced peripheral neuropathy (CIPN) symptom is one of the side effects of paclitaxel in breast cancer patients. This randomised controlled study was conducted to investigate the effect of topical menthol applied on the hands and feet of breast cancer patients receiving chemotherapy on CIPN symptoms. METHODS: 60 breast cancer patients receiving chemotherapy were randomly assigned to an intervention group (n=30), which received topical menthol treatment, or a control group (n=30), which received standard care. Both groups continued their routine pharmacological treatments throughout the study. The intervention group applied 1% menthol topically to their hands and feet two times a day. The effect of the intervention on CIPN symptoms was evaluated 3 weeks and 6 weeks after the intervention. RESULTS: The intervention group showed a significantly greater improvement in CIPN symptoms over time compared with the control group, with an effect size of η2=0.214 for the group×time interaction. Additionally, the intervention group exhibited a notable positive change in the exposure subscale of the CIPN rating scale, with an effect size of η2=0.114. CONCLUSIONS: Topical application of menthol significantly mitigates the symptoms of CIPN in breast cancer patients. This study supports the use of menthol as an effective adjunctive treatment for CIPN. TRIAL REGISTRATION NUMBER: NCT05429814.

Prion diseases motor and neuropsychiatric symptom cluster pharmacotherapy: structured scoping review.

BACKGROUND: Prion diseases are a group of rare, neurodegenerative conditions that are invariably fatal and cause a variety of symptoms, which can prove challenging to control. Through this paper, we aim to review the current evidence regarding pharmacological management of neuropsychiatric and motor symptoms of prion disease as well as draw on experts' and relatives' experience, to evaluate the current evidence and provide recommendations moving forwards. METHODS: A scoping review of the literature for pharmacological management of symptoms was conducted using the systematic review tool, COVIDENCE, with searches conducted through four databases. 120 papers were selected for inclusion, and data extraction was carried out by two independent reviewers. Given the lack of high-quality data and small numbers, no further attempt at statistical analysis was made, and results are presented in a thematic synthesis. RESULTS: Although a broad range of approaches and pharmacotherapies are trialled to manage these challenging symptoms, there are patterns emerging of some efficacy seen with the use of benzodiazepines, antipsychotic and anticonvulsant medications in both motor and neuropsychiatric symptoms in prion disease. These approaches and associated challenges were reflected in international expert opinion that was gathered via online survey. CONCLUSION: There continues to be a paucity of good-quality evidence and we suggest a need for longitudinal, population-based and standardised research to allow a robust evidence base, which in turn will guide excellent symptom control and end of life care for this group of complex patients.

Testing and Validation of a Custom Retrained Large Language Model for the Supportive Care of HN Patients with External Knowledge Base.

PURPOSE: This study aimed to develop a retrained large language model (LLM) tailored to the needs of HN cancer patients treated with radiotherapy, with emphasis on symptom management and survivorship care. METHODS: A comprehensive external database was curated for training ChatGPT-4, integrating expert-identified consensus guidelines on supportive care for HN patients and correspondences from physicians and nurses within our institution's electronic medical records for 90 HN patients. The performance of our model was evaluated using 20 patient post-treatment inquiries that were then assessed by three Board certified radiation oncologists (RadOncs). The rating of the model was assessed on a scale of 1 (strongly disagree) to 5 (strongly agree) based on accuracy, clarity of response, completeness s, and relevance. RESULTS: The average scores for the 20 tested questions were 4.25 for accuracy, 4.35 for clarity, 4.22 for completeness, and 4.32 for relevance, on a 5-point scale. Overall, 91.67% (220 out of 240) of assessments received scores of 3 or higher, and 83.33% (200 out of 240) received scores of 4 or higher. CONCLUSION: The custom-trained model demonstrates high accuracy in providing support to HN patients offering evidence-based information and guidance on their symptom management and survivorship care.

Symptom cluster study undergoing chemotherapy in breast cancer patients: Latent class analysis and contemporaneous network analysis.

Objective: This study aims to explore the subgroups and networks of symptom clusters in breast cancer patients undergoing chemotherapy, and to provide effective interventions for the core symptoms. Methods: A cross-sectional survey was conducted at four comprehensive hospitals in Foshan City, China, from August to November 2023. A total of 292 participants completed the social determinants of health questionnaire, the numerical rating scale (NRS), the Pittsburgh sleep quality index (PSQI), the Chinese version of the cancer fatigue scale (CFS), and the hospital anxiety and depression Scale (HADS). Latent class analysis (LCA) was utilized to distinguish subgroups, and network analysis was utilized to identify core symptoms among different subgroups. Results: Breast cancer patients undergoing chemotherapy exhibit symptoms were divided into two subgroups: the high burden group of symptoms (72.3%, Class 1) and the low burden group of symptoms (27.7%, Class 2). Education attainment, work status, family monthly income per capita, and daily sleep duration (hours) were associated with subgroup membership. "Panic feelings" (# HADS-A11) were the core symptom in both the full sample and Class 2, while "tension or pain" (# HADS-A1) was the core symptom in Class 1. Conclusions: The core symptoms of fear, enjoyment, nervousness, and pain varied across subgroups of patients and could inform the current strategies for symptom management in breast cancer chemotherapy patients.

Symptom Distress Before and After Heart Transplantation - A Longitudinal 5-Year Follow-Up.

INTRODUCTION: Symptom distress after heart transplantation (HTx) is a significant problem causing uncertainty, low self-efficacy, and psychological distress. Few studies have addressed self-reported symptoms. The aim was to explore self-reported symptom distress from time on the waiting list to 5 years after HTx and its association with self-reported psychological well-being, chronic pain, and fatigue in order to identify possible predictors of psychological or transplant specific well-being. METHODS: This multicenter, longitudinal cohort study includes 48 heart recipients (HTRs), 12 women, and 36 men, with a median age of 57 years followed from pretransplant to 5 years post-transplant. Symptom distress was explored by means of four instruments measuring psychological general wellbeing, transplant specific wellbeing, pain, and fatigue. RESULTS: Transplant specific well-being for the whole improved in a stepwise manner during the first 5 years compared to pretransplant. Heart transplant recipients with poor psychological wellbeing were significantly more burdened by symptom distress, in particular sleep problems and fatigue, for up to 5 years after HTx, and their transplant-specific well-being never improved compared to baseline. The prevalence of pain varied from 40% to 60% and explained a significant proportion of the variance in transplant-specific well-being, while psychological general well-being was mainly predicted by overall symptom distress. CONCLUSION: The presence of distressing symptoms explains a significant proportion of poor psychological wellbeing both among HTRs reporting chronic pain and those without pain.

Pain prevalence and pain relief in end-of-life care - a national registry study.

BACKGROUND: Despite pain control being a top priority in end-of-life care, pain continues to be a troublesome symptom and comprehensive data on pain prevalence and pain relief in patients with different diagnoses are scarce. METHODS: The Swedish Register of Palliative Care (SRPC) was used to retrieve data from 2011 to 2022 about pain during the last week of life. Data were collected regarding occurrence of pain, whether pain was relieved and occurrence of severe pain, to examine if pain differed between patients with cancer, heart failure, chronic obstructive pulmonary disease (COPD) and dementia. Binary logistic regression models adjusted for sex and age were used. RESULTS: A total of 315 000 patients were included in the study. Pain during the last week of life was more commonly seen in cancer (81%) than in dementia (69%), heart failure (68%) or COPD (57%), also when controlled for age and sex, p < 0.001. Severe forms of pain were registered in 35% in patients with cancer, and in 17-21% in non-cancer patients. Complete pain relief (regardless of pain intensity) was achieved in 73-87% of those who experienced pain, depending on diagnosis. The proportion of patients with complete or partial pain relief was 99.8% for the whole group. CONCLUSIONS: The occurrence of pain, including severe pain, was less common in patients with heart failure, COPD or dementia, compared to patients with cancer. Compared with cancer, pain was more often fully relieved for patients with dementia, but less often in heart failure and COPD. As severe pain was seen in about a third of the cancer patients, the study still underlines the need for better pain management in the imminently dying. TRIAL REGISTRATION: No trial registration was made as all patients were deceased and all data were retrieved from The Swedish Register of Palliative Care database.

The impact of physical activity and exercise interventions on symptoms for women experiencing menopause: overview of reviews.

BACKGROUND: Women experiencing problematic menopausal symptoms report lower health-related quality of life and greater healthcare use than women without symptoms. Not all women want to or are able to take hormone replacement therapy. Strengthening the evidence for menopause symptom-management options, including physical activity, improves agency for women. AIM: This overview assesses effectiveness of physical activity and exercise interventions targeting women experiencing menopause symptoms. METHODS: Medline, Embase, CINAHL, Scopus, The Cochrane Database of Systematic Reviews and Social Science Citation Index were searched (June 2023) for systematic reviews of physical activity and exercise interventions targeting women experiencing menopause. Reviews were assessed using AMSTAR-2 and a best-evidence approach to synthesis without meta-analysis (SWIM) was adopted. The protocol was registered on PROSPERO (CRD42022298908). RESULTS: Seventeen reviews included 80 unique relevant primary studies with 8983 participants. There is evidence showing improvement of physical, urogenital, and total symptoms following yoga interventions. Evidence for vasomotor and psychological symptoms was inconclusive. Findings for aerobic exercise were inconclusive although there were some examples of beneficial effects on total and vasomotor symptoms. Evidence was very limited for other types of physical activity and impact on physical, sexual and urogenital symptoms. CONCLUSION: There is some evidence that yoga, and to lesser extent, aerobic exercise may be beneficial for some menopause symptoms, but there is insufficient evidence to recommend a particular form of exercise. Current reviews categorise women on menopause status; broadening this to include ethnicity, income status, employment and other factors will allow better understanding of context for successful interventions.

Cancer Doesn't Know the Day of the Week: Temporal Trends in Day of Death.

Studies support the existence of psychosomatic phenomena that enable critically ill patients to postpone death until a specific event. We assessed for this effect in cancer by examining variability in deaths at the month and weekend levels using the National Center for Health Statistics database. We found that deaths from cancer were not uniformly distributed temporally. There was a relative 3.3% difference death rate between the peak on Saturday and nadir on Monday, and relative 10.2% difference in rate of death between the peak of deaths in January and nadir in February. The "weekend effect" could be present in 1 in 200 cancer deaths and the "holiday effect" in 1 in 100 cancer deaths. Temporal variation may reflect a small portion of patients are able to "hold on" for a limited amount of time. This uneven distribution of cancer deaths highlights the importance of improving communication and facilitating end-of-life discussions.

Top Ten Tips Palliative Care Clinicians Should Know Before Their Patient Undergoes Surgery.

Many seriously ill patients undergo surgical interventions. Palliative care clinicians may not be familiar with the nuances involved in perioperative care, however they can play a valuable role in enabling the delivery of patient-centered and goal-concordant perioperative care. The interval of time surrounding a surgical intervention is fraught with medical, psychosocial, and relational risks, many of which palliative care clinicians may be well-positioned to navigate. A perioperative palliative care consult may involve exploring gaps between clinician and patient expectations, facilitating continuity of symptom management or helping patients to designate a surrogate decision-maker before undergoing anesthesia. Palliative care clinicians may also be called upon to direct discussions around perioperative management of modified code status orders and to engage around the goal-concordance of proposed interventions. This article, written by a team of surgeons and anesthesiologists, many with subspecialty training in palliative medicine and/or ethics, offers ten tips to support palliative care clinicians and facilitate comprehensive discussion as they engage with patients and clinicians considering surgical interventions.

Assessing Fidelity in Yoga Interventions for Chemotherapy-Induced Peripheral Neuropathy: Decision-Making to Enhance Protocol Quality Adherence.

BACKGROUND: Yoga interventions need fidelity monitoring to standardize the trial process and ensure adherence. We examined fidelity measures of current yoga trials and developed a fidelity assurance process in a phase III randomized clinical trial addressing chemotherapy-induced peripheral neuropathy among cancer survivors. METHODS: We qualitatively analyzed the fidelity monitoring components in published clinical trials on yoga therapy for chemotherapy-induced peripheral neuropathy through a literature search in PubMed from inception to February 2023. Leveraging fidelity measures for community-based, complex interventions and yoga therapy reporting guidelines, we developed an instructor/participant-oriented fidelity checking approach in an ongoing phase III trial evaluating yoga for improving chemotherapy-induced peripheral neuropathy in cancer survivors. Two researchers independently assessed 4 of 8 video recordings of yoga instructor-led training sessions (50%) and participant-kept home practice logs using a developed fidelity checklist. RESULTS: None of the 4 eligible yoga trials specifically have intervention fidelity measures. We prospectively incorporated yoga instructor training, virtual delivery, and participant engagement strategies in the phase III trial protocol following guidelines. All trial yoga instructors were trained under study protocol to ensure compliance and participant engagement. There was high intervention fidelity in all instructor-led virtual sessions: an average of 100% adherence to class structure and three-thirds on specific skills. Assessment of participant adherence to the established home yoga protocol was 63%. CONCLUSION: Yoga trials for chemotherapy-induced peripheral neuropathy need adequate fidelity measures. Our study provides a feasible fidelity-monitoring approach to ensure trial intervention delivery and protocol adherence by instructors and participants in oncological settings.

Measuring Engagement in Provider-Guided Digital Health Interventions With a Conceptual and Analytical Framework Using Nurse WRITE as an Exemplar: Exploratory Study With an Iterative Approach.

BACKGROUND: Limited guidance exists for analyzing participant engagement in provider-guided digital health interventions (DHIs). System usage is commonly assessed, with acknowledged limitations in measuring socio-affective and cognitive aspects of engagement. Nurse WRITE, an 8-week web-based nurse-guided DHI for managing symptoms among women with recurrent ovarian cancer, offers an opportunity to develop a framework for assessing multidimensional engagement. OBJECTIVE: This study aims to develop a conceptual and analytic framework to measure socio-affective, cognitive, and behavioral engagement with provider-guided DHIs. We then illustrate the framework's ability to describe and categorize engagement using Nurse WRITE as an example. METHODS: A sample of 68 participants from Nurse WRITE who posted on the message boards were included. We adapted a prior framework for conceptualizing and operationalizing engagement across 3 dimensions and finalized a set of 6 distinct measures. Using patients' posts, we created 2 socio-affective engagement measures-total count of socio-affective engagement classes (eg, sharing personal experience) and total word count-and 2 cognitive engagement measures-total count of cognitive engagement classes (eg, asking information-seeking questions) and average question completion percentage. Additionally, we devised behavioral engagement measures using website data-the total count of symptom care plans and plan reviews. k-Means clustering categorized the participants into distinct groups based on levels of engagement across 3 dimensions. Descriptive statistics and narratives were used to describe engagement in 3 dimensions. RESULTS: On average, participants displayed socio-affective engagement 34.7 times, writing 14,851 words. They showed cognitive engagement 19.4 times, with an average of 78.3% completion of nurses' inquiries. Participants also submitted an average of 1.6 symptom care plans and 0.7 plan reviews. Participants were clustered into high (n=13), moderate (n=17), and low engagers (n=38) based on the 6 measures. High engagers wrote a median of 36,956 (IQR 26,199-46,265) words. They demonstrated socio-affective engagement approximately 81 times and cognitive engagement around 46 times, approximately 6 times that of the low engagers and twice that of the moderate engagers. High engagers had a median of 91.7% (IQR 82.2%-93.7%) completion of the nurses' queries, whereas moderate engagers had 86.4% (IQR 80%-96.4%), and low engagers had 68.3% (IQR 60.1%-79.6%). High engagers completed a median of 3 symptom care plans and 2 reviews, while moderate engagers completed 2 plans and 1 review. Low engagers completed a median of 1 plan with no reviews. CONCLUSIONS: This study developed and reported an engagement framework to guide behavioral intervention scientists in understanding and analyzing participants' engagement with provider-guided DHIs. Significant variations in engagement levels across 3 dimensions highlight the importance of measuring engagement with provider-guided DHIs in socio-affective, cognitive, and behavioral dimensions. Future studies should validate the framework with other DHIs, explore the influence of patient and provider factors on engagement, and investigate how engagement influences intervention efficacy.

Exploring symptom clusters in Chinese patients with peritoneal dialysis: a network analysis.

BACKGROUND: In recent years, the research on symptom management in peritoneal dialysis (PD) patients has shifted from a single symptom to symptom clusters and network analysis. This study collected and evaluated unpleasant symptoms in PD patients and explored groups of symptoms that may affect PD patients with a view to higher symptom management. METHODS: The symptoms of PD patients were measured using the modified Dialysis Symptom Index. The symptom network and node characteristics were assessed by network analysis, and symptom clusters were explored by factor analysis. RESULTS: In this study of 602 PD patients (mean age 47.8 ± 16.8 years, 47.34% male), most had less than 2 years of dialysis experience. Five symptom clusters were obtained from factor analysis, which were body symptom cluster, gastrointestinal symptom cluster, mood symptom cluster, sexual disorder symptom cluster, and skin-sleep symptom cluster. Itching and decreased interest in sex may be sentinel symptoms, and being tired or lack of energy and feeling anxious are core symptoms in PD patients. CONCLUSIONS: This study emphasizes the importance of recognizing symptom clusters in PD patients for better symptom management. Five clusters were identified, with key symptoms including itching, decreased interest in sex, fatigue, and anxiety. Early intervention focused on these symptom clusters in PD patients holds promise for alleviating the burden of symptoms.