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In February 2019, recruitment began in Iowa Research Network offices for a Patient-Centered Outcomes Research Institute (PCORI) funded Advance Care Planning (ACP) study to be conducted in 7 primary care practice-based research networks across the United States and Canada. The main study trained clinicians and nursing staff in serious illness care conversations and requested they refer eligible patients. Eligible patients were those with serious illness or frailty expected to live 1 to 2 years. Clinicians indicated it was difficult to identify eligible patients. This study aimed to find better methods for increasing patient recruitment for the ACP study.
People living with a long term condition may wish to be able to plan ahead, so that if in future they cannot make decisions, their wishes about their care will be known; this process is termed Advance Care Planning (ACP). In dementia, guidance stipulates that ACP discussions should take place whilst the person still has capacity to make decisions. However there is a lack of evidence on the effectiveness of ACP in influencing patient choice and resource use. The aims of this study are to determine the effectiveness of ACP in dementia care, identify the factors which facilitate the process in practice and provide a better understanding of the views and experiences of key stakeholders in order to inform clinical practice.
Advance care planning (ACP) clarifies goals for future care if a patient becomes unable to communicate their own preferences. However, ACP uptake is low, with discussions often occurring late. This study assessed whether a systematic nurse-led ACP intervention increases ACP in patients with advanced respiratory disease.
Advance care planning (ACP) is a process of planning for future health and personal care. A person's values and preferences are made known so that they can guide decision making at a future time when that person cannot make or communicate his or her decisions. This is particularly relevant for people with dementia because their ability to make decisions progressively deteriorates over time. This study aims to evaluate the cost-effectiveness of delivering a nationwide ACP program within the Australian primary care setting.
Background Stroke survivors have high rates of mortality and recurrent stroke. Stroke patients are often unable to participate in decision making, highlighting the need for advance care planning ( ACP ) in poststroke care. We sought to better understand experiences and perceptions around stroke risk and ACP in our stroke clinic. Methods and Results Clinic patients completed the Planning After Stroke Survival survey assessing (1) advance directive ( AD ) documentation and ACP conversations, (2) factors associated with ADs and ACP , (3) perceptions of stroke risk, and (4) ACP needs. We used a physician survey and the electronic medical record to assess clinical and demographic information. We collected 219 surveys (78% response rate). Forty-five percent reported having completed ADs , although the correlation between patient report and EMS documentation of ADs was low. Most patients (73%) had discussed ACP , and 58% desired additional conversation. Predictors of completing ADs included age (≥65 years; odds ratio, 4.8; 95% CI, 2.3-10.1), white race (odds ratio, 3.1; 95% CI , 1.2-7.8), milder poststroke disability (modified Rankin Scale score ≤1; odds ratio, 2.9; 95% CI , 1.3-6.4), having previously discussed ACP with a physician (odds ratio, 4.8; 95% CI , 2.0-11.7), and discussing risk of stroke recurrence (odds ratio, 2.2; 95% CI , 1.1-4.5). Conclusions Stroke survivors had low AD completion rates and desired more conversations about stroke risk and ACP . Completed ADs were inconsistently documented in the electronic medical record. These findings provide guidance to improve ACP in our stroke clinic and may provide a model for others interested in enhancing ACP and ultimately goal-concordant care.
Family-centered care is a valued approach to improving child and family outcomes in early intervention (EI), yet there is need to implement interventions that support information exchange for shared decision-making when planning and monitoring EI care. This study aims at estimating the feasibility, acceptability, and value of implementing the Young Children's Participation and Environment Measure (YC-PEM), a valid electronic patient-reported outcome (e-PRO) that is designed to support family engagement when planning care and monitoring outcomes of care.
The number of older people with intellectual disabilities (IDs) is increasing in parallel to the lengthening life expectancy of the overall population. Little is known about the needs of older people with IDs who are at life's end. Service providers who offer direct care to people with IDs have begun to develop partnerships with hospice and palliative care specialists to provide focused care that is more specialized for their clients or residents who are approaching the end of life. However, community-based programs utilize different philosophies of care that focus on the daily management of people with IDs compared to programs that focus on care at the end of life. Merging these two approaches to care in community-based residences or community-based programs for people with IDs brings challenges for both types of programs. This article compares person-centered planning and patient-focused, family-centered care and proposes means for merging the two seemingly disparate approaches to care.
Background: There are well-known methodological and analytical challenges in planning regional healthcare services (HCS). Increasingly, the need for data-derived planning, including user-perspectives, is discussed. This study aims to better understand the possible contribution of citizen experience in the assessment of regional HCS needs in two regions of Germany. Methods: We conducted a written survey in two regions of differing size-a community (3653 inhabitants) and a county (165,211 inhabitants). Multinomial logistic regression was used to assess the impact of sociodemographic and regional factors on the assessment of HCS provided by general practitioners (GPs) and specialists. Results: Except for age and financial resources available for one's own health, populations did not differ significantly between the regions. However, citizens' perception of HCS (measured by satisfaction with 1 = very good to 5 = very poor) differed clearly between different services (e.g., specialists: 3.8-4.3 and pharmacies: 1.7-2.5) as well as between regions (GPs: 1.7-3.1; therapists: 2.9-4). In the multivariate model, region (next to income and age) was a consistent predictor of the perception of GP- and specialist-provided care. Discussion: Citizens' perceptions of HCS correspond to regional provider density (the greater the density, the better the perception) and add insights into citizens' needs. Therefore, they can provide valuable information on regional HCS strengths and weaknesses and are a valid resource to support decision makers in shaping regional care structures.
Advance care planning (ACP) is a process of reflection on and communication of a person's future health-care preferences. Evidence suggests visible minorities engage less in ACP. The South Asian ethnic group is the largest visible minority group in Canada, and information is needed to understand how ACP is perceived and how best to approach ACP within this diverse community.
The focus of family planning counselling is gradually shifting from the tiered-effectiveness model to patient-centred counselling. Although tools exist that aim to make family planning counselling more patient-oriented without increasing the provider's workload, they are not widely used. This scoping review aims to address this by identifying key tools to make family planning care more patient-centred, reviewing the domains of patient-centred care they address, and identifying gaps in the evidence base.
Patient-specific computational models have been extensively developed over the last decades and applied to investigate a wide range of cardiovascular problems. However, translation of these technologies into clinical applications, such as planning of medical procedures, has been limited to a few single case reports. Hence, the use of patient-specific models is still far from becoming a standard of care in clinical practice. The aim of this study is to describe our experience with a modelling framework that allows patient-specific simulations to be used for prediction of clinical outcomes. A cohort of 12 patients with congenital heart disease who were referred for percutaneous pulmonary valve implantation, stenting of aortic coarctation and surgical repair of double-outlet right ventricle was included in this study. Image data routinely acquired for clinical assessment were post-processed to set up patient-specific models and test device implantation and surgery. Finite-element and computational fluid dynamics analyses were run to assess feasibility of each intervention and provide some guidance. Results showed good agreement between simulations and clinical decision including feasibility, device choice and fluid-dynamic parameters. The promising results of this pilot study support translation of computer simulations as tools for personalization of cardiovascular treatments.
The electronic patient record (EPR) has been introduced into nursing homes in order to facilitate documentation practices such as assessment and care planning, which play an integral role in the provision of dementia care. However, little is known about how the EPR facilitates or hinders these practices from the end-user's perspective. Therefore, the objective of this qualitative study was to explore the usability issues associated with the EPR for assessment and care planning for people with dementia in nursing homes from a staff perspective.
Lynch syndrome (LS) is a hereditary cancer syndrome characterized by an increased risk of multiple cancers, predominantly endometrial and colorectal, at a younger age (typically < 50). In prior research, high death anxiety and a lack of provider-initiated communication about advance care planning (ACP) have been shown to decrease a patient's likelihood of having advance directives. Providers often have gaps in knowledge and are uncomfortable with these conversations. We used a mixed methods approach (quantitative survey with a follow-up telephone interview) to assess knowledge, preferences, and attitudes regarding ACP in individuals with LS (n = 20). This study also assessed which ACP documents individuals already had in place and which persons (providers, family, or friends) an individual made aware of the documentation and/or preferences. These data were analyzed to determine patient preferences for who is responsible for initiating these conversations, identify motivating factors and barriers to these conversations, and determine whether the current conversations are adequate to meet the needs of this patient population. Participants recognized the importance of ACP and expressed interest in creating these documents. However, knowledge and confidence about these topics were lacking, with many participants attributing this to their young age and lack of experience. Although uncomfortable, many patients want to have ACP discussions with their providers, but frequently patients were only asked if these documents are completed with no further discussion. These findings can inform educational efforts to improve knowledge of ACP and interventional research to increase use of ACP by individuals with LS.
Introduction: The majority of nursing home (NH) patients suffer from complex diseases, including dementia. This makes advance care planning (ACP) particularly important. Objectives: The aim was to investigate the effect of an ACP intervention on communication among NH staff, patient, and family. We further investigated whether the intervention affected nursing staff distress. Methods: The ACP intervention was a part of the 4-month cluster randomized controlled COSMOS trial with a 9-month follow-up. Norwegian NH units (n = 72), with 765 patients were invited, and eligible units were cluster randomized to usual care or the intervention group. The ACP intervention consisted of an education program targeting all NH staff (nurses and physicians) and managers. Implementation was supported by a train-the-trainer approach, with regular phone calls from the researchers. The effect of the intervention was assessed by a data collection form and questionnaires. Nursing staff distress was assessed by the Neuropsychiatric Inventory -Nursing Home version. Results: Five hundred and forty five patients from 67 NH units were included and randomized to the intervention (N = 297; 36 units) and control group (N = 248; 31 units). Organized meetings between the family, patient, and nurses were conducted more frequently in the intervention compared to the control group at month 4 (OR = 3.9, 95% CI = 1.6 to 9.4, p = 0.002). Monthly contact between family and nurses was also more frequent in the intervention group (OR = 6.5, 95% CI = 1.6 to 3.5, p = 0.010). Nurses and families were more satisfied with their communication in the intervention compared to the control group. Staff distress was reduced in the intervention group at month 4 (B = -1.8, 95% CI = -3.1 to -0.4, p = 0.012). The intervention effect at month 4 did not persist during follow-up at month 9. Conclusion: Compared to control, the ACP intervention improved the communication, and family and staff satisfaction as well as reduced staff distress. However, during the follow-up period these positive effects were not persistent. Indicating the necessity for ongoing staff support regarding ACP. Trial Registration: www.ClinicalTrials.gov (NCT02238652).
Dementia is one of the leading causes of dependency and disability among older people and currently the seventh leading cause of death among all diseases. In recent years, healthcare research in Advance Care Planning in dementia care has received increased attention. Advance Care Planning is a discussion process conducted in anticipation of future deterioration of a person's health condition. The purpose of the study was to investigate the views of dementia nurses and geriatricians on Advance Care Planning in dementia care.
Advance care planning (ACP) is a process that enables individuals to describe, in advance, the kind of health care they would want in the future. There is evidence that ACP reduces hospital-based interventions, especially at the end of life. ACP for frail older adults is especially important as this population is more likely to use hospital services but less likely to benefit from resource intensive care. Our study goal was to evaluate whether an approach to ACP developed for frail older adults, known as the Palliative and Therapeutic Harmonization or PATH, demonstrated an improvement in ACP.
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