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Background: Missing data are common in end-of-life care studies, but there is still relatively little exploration of which is the best method to deal with them, and, in particular, if the missing at random (MAR) assumption is valid or missing not at random (MNAR) mechanisms should be assumed. In this paper we investigated this issue through a sensitivity analysis within the ACTION study, a multicenter cluster randomized controlled trial testing advance care planning in patients with advanced lung or colorectal cancer.Methods: Multiple imputation procedures under MAR and MNAR assumptions were implemented. Possible violation of the MAR assumption was addressed with reference to variables measuring quality of life and symptoms. The MNAR model assumed that patients with worse health were more likely to have missing questionnaires, making a distinction between single missing items, which were assumed to satisfy the MAR assumption, and missing values due to completely missing questionnaire for which a MNAR mechanism was hypothesized. We explored the sensitivity to possible departures from MAR on gender differences between key indicators and on simple correlations.Results: Up to 39% of follow-up data were missing. Results under MAR reflected that missingness was related to poorer health status. Correlations between variables, although very small, changed according to the imputation method, as well as the differences in scores by gender, indicating a certain sensitivity of the results to the violation of the MAR assumption.Conclusions: The findings confirmed the importance of undertaking this kind of analysis in end-of-life care studies. [ABSTRACT FROM AUTHOR]

Background: Frail older adults are increasingly expected to self-manage their health and healthcare. We assessed the extent to which this group is able to take up this responsibility by measuring their level of activation as patients (i.e. their knowledge, skills and confidence to self-manage their health and healthcare). Further, we studied which characteristics of older adults were associated with patient activation.Methods: In this cross-sectional study 200 frail, competent adults (median age 87 years) participated. Participants were community-dwelling adults who received home care and residents of care homes. Data were collected via personal interviews in participants' homes. The main outcome measure was patient activation assessed by the short version of the Patient Activation Measure (PAM-13; range: 0-100). The PAM distinguishes four levels of increasing activation with level 1 indicating poor patient activation and level 4 adequate patient activation. Other studied variables were: multimorbidity, type of residency, frailty (Tilburg Frailty Index), mental competence (Mini Mental State Examination), health-related quality of life (SF-12), satisfaction with healthcare (subscale Patient Satisfaction Questionnaire) and personal characteristics (age, gender, marital status, educational level). Regression analyses were performed to investigate which variables were associated with patient activation.Results: Participants had a median PAM score of 51. Thirty-nine percent had level 1 activation, 31% level 2, 26% level 3 and 5% level 4. Fifty-nine percent of community dwelling adults had level 1 or 2 activation versus 81% of care home residents (p = 0.007). Mental competence (Effect: 0.52, CI: 0.03-1.01, p = 0.04) and health-related quality of life (Effect: 0.15, CI: 0.01-0.30, p = 0.04 for physical health; Effect: 0.20, CI: 0.07-0.34, p = 0.003 for mental health) were positively associated with patient activation. Frailty (Effect: -1.06, CI: -1.75 - -0.36, p = 0.003) was negatively associated with patient activation.Conclusions: The majority of this frail and very old study population, especially those with a lower health-related quality of life, may be unable to self-manage their health and healthcare to the level expected from them. The increasing population of frail older adults may need help in managing their health and healthcare. [ABSTRACT FROM AUTHOR]

Background: Awareness of preferences regarding medical care should be a central component of the care of patients with advanced cancer. Open communication can facilitate this but can occur in an ad hoc or variable manner. Advance care planning (ACP) is a formalized process of communication between patients, relatives and professional caregivers about patients' values and care preferences. It raises awareness of the need to anticipate possible future deterioration of health. ACP has the potential to improve current and future healthcare decision-making, provide patients with a sense of control, and improve their quality of life.Methods/design: We will study the effects of the ACP program Respecting Choices on the quality of life of patients with advanced lung or colorectal cancer. In a phase III multicenter cluster randomised controlled trial, 22 hospitals in 6 countries will be randomised. In the intervention sites, patients will be offered interviews with a trained facilitator. In the control sites, patients will receive care as usual. In total, 1360 patients will be included. All participating patients will be asked to complete questionnaires at inclusion, and again after 2.5 and 4.5 months. If a patient dies within a year after inclusion, a relative will be asked to complete a questionnaire on end-of-life care. Use of medical care will be assessed by checking medical files. The primary endpoint is patients' quality of life at 2.5 months post-inclusion. Secondary endpoints are the extent to which care as received is aligned with patients' preferences, patients' evaluation of decision-making processes, quality of end-of-life care and cost-effectiveness of the intervention. A complementary qualitative study will be carried out to explore the lived experience of engagement with the Respecting Choices program from the perspectives of patients, their Personal Representatives, healthcare providers and facilitators.Discussion: Transferring the concept of ACP from care of the elderly to patients with advanced cancer, who on average are younger and retain their mental capacity for a larger part of their disease trajectory, is an important next step in an era of increased focus on patient centered healthcare and shared decision-making.Trial Registration: International Standard Randomised Controlled Trial Number: ISRCTN63110516. Date of registration: 10/3/2014. [ABSTRACT FROM AUTHOR]

Background: Currently, health care and medical decision-making at the end of life for older people are often insufficiently patient-centred. In this trial we study the effects of Advance Care Planning (ACP), a formalised process of timely communication about care preferences at the end of life, for frail older people. Methods/Design: We will conduct a cluster randomised controlled trial among older people residing in care homes or receiving home care in the Netherlands. The intervention group will receive the ACP program Respecting Choices® in addition to usual care. The control group will receive usual care only. Participants in both groups will fill out questionnaires at baseline and after 12 months. We hypothesize that ACP will lead to better patient activation in medical decision making and quality of life, while reducing the number of medical interventions and thus health care costs. Multivariate analysis will be used to compare differences between the intervention group and the control group at baseline and to compare differences in changes after 12 months following the inclusion. Discussion: Our study can contribute to more understanding of the effects of ACP on patient activation and quality of life in frail older people. Further, we will gain insight in the costs and cost-effectiveness of ACP. This study will facilitate ACP policy for older people in the Netherlands. [ABSTRACT FROM AUTHOR]

Background: The care of wounds is an ongoing issue for Indigenous people worldwide, yet culturally safe Indigenous wound care training programs for rural and remote Australian Aboriginal Health Workers are largely unavailable. The higher prevalence of chronic disease, lower socioeconomic status and poorer access to services experienced by Aboriginal and Torres Strait Islanders compared to non-Indigenous people, leads to a greater incidence of chronic wounds in Aboriginal and Torres Strait Islander people. Identifying the barriers and enablers for delivering wound care will establish areas of need for facilitating the development of a specific wound care program for Aboriginal Health Workers and Aboriginal Health Practitioners. This paper reports the first phase of a larger project directly aligned to the Indigenous Australians' Health Program's objective of supporting the delivery and access to high quality, culturally appropriate health care and services to Aboriginal and Torres Strait Islander Australians. This study aimed to examine experiences of Aboriginal Health Workers, Aboriginal Health Practitioners, and nurses for managing chronic wounds within rural and remote Aboriginal Medical Services in Queensland, Australia., Methods: Yarning facilitated by two Aboriginal researchers among Aboriginal Health Workers, Aboriginal Health Practitioners, and nurses currently employed within four Aboriginal Medical Services located in rural and remote areas of Queensland, Australia., Results: Two themes were developed through rigorous data analysis of yarning information and responses: participants' experiences of managing wounds and barriers and enablers to effective wound care., Conclusions: This study contributes an insight into the experiences of Aboriginal Health Workers on the current barriers and enablers to timely treatment of chronic wounds. Results from this study indicate a significant barrier to obtaining timely and effective wound care in regional and remote settings is access to an appropriately skilled, culturally competent, and resourced health work force. A lack of education and professional development for Aboriginal Health Workers can compromise their ability to maximise patient outcomes and delay wound healing. Findings have informed the development of an evidence based, culturally competent open access chronic wound care education program for Aboriginal Health Workers., (© 2024. The Author(s).)

Background: Most patients starting chronic in-center hemodialysis (HD) receive conventional hemodialysis (CHD) with three sessions per week targeting specific biochemical clearance. Observational studies suggest that patients with residual kidney function can safely be treated with incremental prescriptions of HD, starting with less frequent sessions and later adjusting to thrice-weekly HD. This trial aims to show objectively that clinically matched incremental HD (CMIHD) is non-inferior to CHD in eligible patients., Methods: An unblinded, parallel-group, randomized controlled trial will be conducted across diverse healthcare systems and dialysis organizations in the USA. Adult patients initiating chronic hemodialysis (HD) at participating centers will be screened. Eligibility criteria include receipt of fewer than 18 treatments of HD and residual kidney function defined as kidney urea clearance ≥3.5 mL/min/1.73 m 2 and urine output ≥500 mL/24 h. The 1:1 randomization, stratified by site and dialysis vascular access type, assigns patients to either CMIHD (intervention group) or CHD (control group). The CMIHD group will be treated with twice-weekly HD and adjuvant pharmacologic therapy (i.e., oral loop diuretics, sodium bicarbonate, and potassium binders). The CHD group will receive thrice-weekly HD according to usual care. Throughout the study, patients undergo timed urine collection and fill out questionnaires. CMIHD will progress to thrice-weekly HD based on clinical manifestations or changes in residual kidney function. Caregivers of enrolled patients are invited to complete semi-annual questionnaires. The primary outcome is a composite of patients' all-cause death, hospitalizations, or emergency department visits at 2 years. Secondary outcomes include patient- and caregiver-reported outcomes. We aim to enroll 350 patients, which provides ≥85% power to detect an incidence rate ratio (IRR) of 0.9 between CMIHD and CHD with an IRR non-inferiority of 1.20 (α = 0.025, one-tailed test, 20% dropout rate, average of 2.06 years of HD per patient participant), and 150 caregiver participants (of enrolled patients)., Discussion: Our proposal challenges the status quo of HD care delivery. Our overarching hypothesis posits that CMIHD is non-inferior to CHD. If successful, the results will positively impact one of the highest-burdened patient populations and their caregivers., Trial Registration: Clinicaltrials.gov NCT05828823. Registered on 25 April 2023., (© 2024. The Author(s).)

Background: High-grade serous carcinoma (HGSC) is the most frequent and lethal type of ovarian cancer. It has been proposed that tubal secretory cells are the origin of ovarian HGSC in women with familial BRCA1/2 mutations. However, the molecular changes underlying malignant transformation remain unknown., Method: We performed single-cell RNA and T cell receptor sequencing of tubal fimbriated ends from 3 BRCA1 germline mutation carriers (BRCA1 carriers) and 3 normal controls with no high-risk history (non-BRCA1 carriers)., Results: Exploring the transcriptomes of 19,008 cells, predominantly from BRCA1 + samples, we identified 5 major cell populations in the fallopian tubal mucosae. The secretory cells of BRCA1 + samples had differentially expressed genes involved in tumor growth and regulation, chemokine signaling, and antigen presentation compared to the wild-type BRCA1 controls. There are several novel findings in this study. First, a subset of the fallopian tubal secretory cells from one BRCA1 carrier exhibited an epithelial-to-mesenchymal transition (EMT) phenotype, which was also present in the mucosal fibroblasts. Second, we identified a previously unreported phenotypic split of the EMT secretory cells with distinct evolutionary endpoints. Third, we observed increased clonal expansion among the CD8 + T cell population from BRCA1 + carriers. Among those clonally expanded CD8 + T cells, PD-1 was significantly increased in tubal mucosae of BRCA1 + patients compared with that of normal controls, indicating that T cell exhaustion may occur before the development of any premalignant or malignant lesions., Conclusion: These results indicate that EMT and immune evasion in normal-looking tubal mucosae may represent early events leading to the development of HGSC in women with BRCA1 germline mutation. Our findings provide a probable molecular mechanism explaining why some, but not all, women with BRCA1 germline mutation present with early development and rapid dissemination of HGSC., (© 2022. The Author(s).)

Background: U.S. hospitals and dialysis centers are penalized for 30-day hospital readmissions of dialysis patients, despite little infrastructure to facilitate care transitions between these settings. We are developing a third-party web-based information exchange platform, DialysisConnect, to enable clinicians to view and exchange information about dialysis patients during admission, hospitalization, and discharge. This health information technology solution could serve as a flexible and relatively affordable solution for dialysis facilities and hospitals across the nation who are seeking to serve as true partners in the improved care of dialysis patients. The purpose of this study was to evaluate the perceived coherence of DialysisConnect to key clinical stakeholders, to prepare messaging for implementation., Methods: As part of a hybrid effectiveness-implementation study guided by Normalization Process Theory, we collected data on stakeholder perceptions of continuity of care for patients receiving maintenance dialysis and a DialysisConnect prototype before completing development and piloting the system. We conducted four focus groups with stakeholders from one academic hospital and associated dialysis centers [hospitalists (n = 5), hospital staff (social workers, nurses, pharmacists; n = 9), nephrologists (n = 7), and dialysis clinic staff (social workers, nurses; n = 10)]. Transcriptions were analyzed thematically within each component of the construct of coherence (differentiation, communal specification, individual specification, and internalization)., Results: Participants differentiated DialysisConnect from usual care variously as an information dashboard, a quick-exchange communication channel, and improved discharge information delivery; some could not differentiate it in terms of workflow. The purpose of DialysisConnect (communal specification) was viewed as fully coherent only for communicating outside of the same healthcare system. Current system workarounds were acknowledged as deterrents for practice change. All groups delegated DialysisConnect tasks (individual specification) to personnel besides themselves. Partial internalization of DialysisConnect was achieved only by dialysis clinic staff, based on experience with similar technology., Conclusions: Implementing DialysisConnect for clinical users in both settings will require presenting a composite picture of current communication processes from all stakeholder groups to correct single-group misunderstandings, as well as providing data about care transitions communication beyond the local context to ease resistance to practice change.

Background: Protein inter-residue contact and distance prediction are two key intermediate steps essential to accurate protein structure prediction. Distance prediction comes in two forms: real-valued distances and 'binned' distograms, which are a more finely grained variant of the binary contact prediction problem. The latter has been introduced as a new challenge in the 14th Critical Assessment of Techniques for Protein Structure Prediction (CASP14) 2020 experiment. Despite the recent proliferation of methods for predicting distances, few methods exist for evaluating these predictions. Currently only numerical metrics, which evaluate the entire prediction at once, are used. These give no insight into the structural details of a prediction. For this reason, new methods and tools are needed., Results: We have developed a web server for evaluating predicted inter-residue distances. Our server, DISTEVAL, accepts predicted contacts, distances, and a true structure as optional inputs to generate informative heatmaps, chord diagrams, and 3D models. All of these outputs facilitate visual and qualitative assessment. The server also evaluates predictions using other metrics such as mean absolute error, root mean squared error, and contact precision., Conclusions: The visualizations generated by DISTEVAL complement each other and collectively serve as a powerful tool for both quantitative and qualitative assessments of predicted contacts and distances, even in the absence of a true 3D structure.

Background: Household smoke-free home rules cannot fully protect nonsmokers from secondhand smoke (SHS) if they live in multi-unit housing (MUH). Instead, property-level smoke-free policies are needed to prevent SHS incursion into apartment units and to keep common areas smoke-free. Smoke-free policies are usually at the discretion of property management companies and owners within the context of market-rate and privately-owned affordable housing in the U.S., Methods: Semi-structured interviews on the policy development, implementation and enforcement experiences of 21 different privately-owned affordable housing management companies were conducted with representatives from properties in North Carolina and Georgia who had established smoke-free policies before 2016., Results: The decision to adopt was typically made by corporate leadership, board members, owners or property managers, with relatively little resident input. Policy details were influenced by property layout, perceptions of how best to facilitate compliance and enforcement, and cost of creating a designated smoking area. Policies were implemented through inclusion in leases, lease addenda or house rules with 6 months' notice most common. Participants thought having a written policy, the norms and culture of the housing community, public norms for smoke-free environments, and resident awareness of the rules and their consequences, aided with compliance. Violations were identified through routine inspections of units and resident reporting. Resident denial and efforts to hide smoking were shared as challenges to enforcement, along with a perception that concrete evidence would be needed in eviction court and that simply the smell of SHS was insufficient evidence of violation. Over half had terminated leases or evicted residents due to violations of the smoke-free policy. The most common benefits cited were reduced turnover cost and time, and lower vacancy rates., Conclusions: Understanding the smoke-free policy process in privately-owned affordable housing can help practitioners encourage policies within subsidized housing contexts. The study identified salient benefits (e.g., reduced cost, time, and vacancies) that can be highlighted when encouraging MUH partners to adopt policies. Additionally, study findings provide guidance on what to consider when designing smoke-free policies (e.g., layout, costs), and provide insights into how to enhance compliance (e.g., resident awareness) and manage enforcement (e.g., routine inspections).

Background: Effective handover is crucial for patient safety. Rural health care organisations have particular challenges in relation to handover of information, placing them at higher risk of adverse events. Few studies have examined the relationship between handover and patient safety in rural contexts, particularly in Australia. This study aimed to explore the effect of handover on overall perceptions of patient safety and the effect of other patient safety dimensions on handover in a rural Australian setting., Methods: A cross-sectional online survey using The Agency for Healthcare Research and Quality Hospital Survey on Patient Safety Culture was implemented across six rural Local Health Districts in NSW, Australia and resulted in 1587 respondents. Hierarchical multiple linear regression analysis was conducted to account for the nested nature of the data. Models were developed to assess the effect of handover on patient safety perceptions, and the effect of other patient safety culture composites on handover variables. Open-ended questions about patient safety were inductively analyzed for themes. Quotes from the handover theme are presented., Results: All models were significant overall (p < .001), with explanatory powers ranging from 29 to 48%. Within rural health settings, effective handover is significantly related to patient safety perceptions (R 2  = .29). A strong teamwork culture and management support culture was found to enhance effective handover of patient information (R 2  = .47), and effective handover of personal responsibility (R 2  = .37). A strong teamwork, management support, and open communication culture enhances handover of department accountability (R 2  = .41). Despite the implementation of standardised communication tools and frameworks for handover, patient safety is compromised by inadequate coordination, poor or absent documentation between departments, between other health care agencies and in transfer of care from acute facilities to primary/community care., Conclusion: Approaches to handover need to consider the particular challenges associated with rurality and strengthening elements found to be associated with increased safety, such as a strong teamwork and management culture and good reporting practices. Research is required to examine how communication at transition of care, particularly between facilities, is conducted and ways in which to enhance patients' and families' participation.

Background: New information from various clinical settings suggests that tight blood pressure control may not reduce mortality and may be associated with more side effects., Methods: We performed cross-sectional multivariable ordered logistic regression to examine the association between predialysis blood pressure and the short physical performance battery (SPPB) in a cohort of 749 prevalent hemodialysis patients in the San Francisco and Atlanta areas recruited from July 2009 to August 2011 to study the relationship between systolic blood pressure and objective measures of physical function. Mean blood pressure for three hemodialysis sessions was analyzed in the following categories: <110 mmHg, 110-129 mmHg (reference), 130-159 mmHg, and ≥160 mmHg. SPPB includes three components: timed repeated chair stands, timed 15-ft walk, and balance tests. SPPB was categorized into ordinal groups (≤6, 7-9, 10-12) based on prior literature., Results: Patients with blood pressure 130-159 mmHg had lower odds (OR 0.57, 95% CI 0.35-0.93) of scoring in a lower SPPB category than those whose blood pressure was between 110 and 129 mmHg, while those with blood pressure≥160 mmHg had 0.56 times odds (95% CI 0.33-0.94) of scoring in a lower category when compared with blood pressure 110-129 mmHg. When individual components were examined, blood pressure was significantly associated with chair stand (130-159 mmHg: OR 0.59, 95% CI 0.38-0.92) and gait speed (≥160 mmHg: OR 0.59, 95% CI 0.35-0.98). Blood pressure≥160 mmHg was not associated with substantially higher SPPB score compared with 130-159 mmHg., Conclusions: Patients with systolic blood pressure at or above 130 mmHg had better physical performance than patients with lower blood pressure in the normotensive range. The risk-benefit tradeoff of aggressive blood pressure control, particularly in low-functioning patients, should be reexamined.