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Family dynamics in a multi-ethnic Asian society: comparison of elderly CKD patients and their family caregivers experience with medical decision making for managing end stage kidney disease.

ABSTRACT: BACKGROUND:Elderly end stage kidney patients face a decision concerning whether or not to initiate dialysis. In Asia, this decision is highly influenced by family caregivers. The objective of this paper was to understand patients' experience with and preferences for family involvement in treatment decisions, and via a series of hypothetical vignettes, to identify whether there was discordance in treatment preferences between patients and their caregivers, and how any potential conflicts were reconciled. METHODS:We conducted a survey with 151 elderly (aged ?65) chronic kidney disease patients and their caregivers at outpatient renal clinics. The survey asked, when making treatment decisions, whom they wish makes the final decisions (i.e., preference) and who usually makes the final decisions (i.e., experience). The survey also presented a series of choice vignettes for managing patient's condition and asked respondents to choose between two hypothetical treatment profiles in each vignette. Patients and caregivers were first interviewed separately in tandem, and then were brought together to choose a treatment jointly for vignettes where the initial treatment choice differed within the dyad. We used multivariate regressions to investigate the predictors of discordance and reconciliation. RESULTS:We found that most (51%) patients preferred and experienced (64%) significant involvement from caregivers. However, 38% of patients preferred to make final decisions alone but only 27% of patients did. In the hypothetical vignettes, caregivers chose the more intensive option (i.e., dialysis) more than patients did (26% vs 19%; p?

SUBMITTER: Ozdemir S

PROVIDER: S-EPMC6397496 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature

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Family dynamics in a multi-ethnic Asian society: comparison of elderly CKD patients and their family caregivers experience with medical decision making for managing end stage kidney disease.

Ozdemir Semra S Jafar Tazeen H TH Choong Lina Hui Lin LHL Finkelstein Eric Andrew EA

BMC nephrology 20190301 1

<h4>Background</h4>Elderly end stage kidney patients face a decision concerning whether or not to initiate dialysis. In Asia, this decision is highly influenced by family caregivers. The objective of this paper was to understand patients' experience with and preferences for family involvement in treatment decisions, and via a series of hypothetical vignettes, to identify whether there was discordance in treatment preferences between patients and their caregivers, and how any potential conflicts ...[more]

PMID: 30823872

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Project description:BackgroundHousing has been associated with dementia risk and disability, but associations of housing with differential patterns of neuropsychiatric symptoms (NPS) among dementia-free older adults remain to be explored. The present study sought to explore the contribution of housing status on NPS and subsyndromes associated with cognitive dysfunction in community-dwelling dementia-free elderly in Singapore.MethodsA total of 839 dementia-free elderly from the Epidemiology of Dementia in Singapore (EDIS) study aged ≥ 60 were enrolled in the current study. All participants underwent clinical, cognitive, and neuropsychiatric inventory (NPI) assessments. The housing status was divided into three categories according to housing type. Cognitive function was measured by a comprehensive neuropsychological battery. The NPS were assessed using 12-term NPI and were grouped into four clinical subsyndromes: psychosis, hyperactivity, affective, and apathy. Associations of housing with composite and domain-specific Z-scores, as well as NPI scores, were assessed using generalized linear models (GLM). Binary logistic regression models analysed the association of housing with the presence of NPS and significant NPS (NPI total scores ≥ 4).ResultsBetter housing status (5-room executive apartments, condominium, or private housing) was associated with better NPS (OR = 0.49, 95%CI = 0.24 to 0.98, P < 0.05) and significant NPS profile (OR = 0.20, 95%CI = 0.08 to 0.46, P < 0.01), after controlling for demographics, risk factors, and cognitive performance. Compared with those living in 1-2 room apartments, older adults in better housing had lower total NPI scores (β=-0.50, 95%CI=-0.95 to -0.04, P = 0.032) and lower psychosis scores (β=-0.36, 95%CI=-0.66 to -0.05, P = 0.025), after controlling for socioeconomic status (SES) indexes. Subgroup analysis indicated a significant correlation between housing type and NPS in females, those of Malay ethnicity, the more educated, those with lower income, and those diagnosed with cognitive impairment, no dementia (CIND).ConclusionsOur study showed a protective effect of better housing arrangements on NPS, especially psychosis in a multi-ethnic Asian geriatric population without dementia. The protective effect of housing on NPS was independent of SES and might have other pathogenic mechanisms. Improving housing could be an effective way to prevent neuropsychiatric disturbance among the elderly.

Project description:End-of-life-decisions (EOLD) have become an important part of modern intensive care medicine. With increasing therapeutic possibilities on the one hand and many ICU-patients lacking decision making capacity or an advance directive on the other the decision making process is a major challenge on the intensive care unit (ICU). Currently, data are poor on factors associated with EOLD in Germany. In 2009, a new law on advance directives binding physicians and the patient's surrogate decision makers was enacted in Germany. So far it is unknown if this law influenced proceedings of EOLD making on the ICU.A retrospective analysis was conducted on all deceased patients (n = 224) in a 22-bed surgical ICU of a German university medical center from 08/2008 to 09/2010. Patient characteristics were compared between patients with an EOLD and those without an EOLD. Patients with an EOLD admitted before and after change of legislation were compared with respect to frequencies of EOLD performance as well as advance directive rates.In total, 166 (74.1%) of deaths occurred after an EOLD. Compared to patients without an EOLD, comorbidities, ICU severity scores, and organ replacement technology did not differ significantly. EOLDs were shared within the caregiverteam and with the patient's surrogate decision makers. After law enacting, no differences in EOLD performance or frequency of advance directives (8.9% vs. 9.9%; p = 0.807) were observed except an increase of documentation efforts associated with EOLDs (18.7% vs. 43.6%; p<0.001).In our ICU EOLD proceedings were performed patient-individually. But EOLDs follow a standard of shared decision making within the caregiverteam and the patient's surrogate decision makers. Enacting a law on advance directives has not affected the decision making-process in EOLDs nor has it affected population's advance care planning habits. However, it has led to increased EOLD-associated documentation on the ICU.[corrected] ClinicalTrials.gov NCT01294189.

Project description:BACKGROUND AND OBJECTIVES:Little is known about the quality of end-of-life care for patients with advanced CKD. We describe the relationship between patterns of end-of-life care and dialysis treatment with family-reported quality of end-of-life care in this population. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS:We designed a retrospective observational study among a national cohort of 9993 veterans with advanced CKD who died in Department of Veterans Affairs facilities between 2009 and 2015. We used logistic regression to evaluate associations between patterns of end-of-life care and receipt of dialysis (no dialysis, acute dialysis, maintenance dialysis) with family-reported quality of end-of-life care. RESULTS:Overall, 52% of cohort members spent ?2 weeks in the hospital in the last 90 days of life, 34% received an intensive procedure, and 47% were admitted to the intensive care unit, in the last 30 days, 31% died in the intensive care unit, 38% received a palliative care consultation in the last 90 days, and 36% were receiving hospice services at the time of death. Most (55%) did not receive dialysis, 12% received acute dialysis, and 34% received maintenance dialysis. Patients treated with acute or maintenance dialysis had more intensive patterns of end-of-life care than those not treated with dialysis. After adjustment for patient and facility characteristics, receipt of maintenance (but not acute) dialysis and more intensive patterns of end-of-life care were associated with lower overall family ratings of end-of-life care, whereas receipt of palliative care and hospice services were associated with higher overall ratings. The association between maintenance dialysis and overall quality of care was attenuated after additional adjustment for end-of-life treatment patterns. CONCLUSIONS:Among patients with advanced CKD, care focused on life extension rather than comfort was associated with lower family ratings of end-of-life care regardless of whether patients had received dialysis.

Project description:BACKGROUND:An estimated 60%-90% of patients with cancer experience moderate to severe pain. Poorly managed cancer pain negatively affects the quality of life for both patients and their family caregivers and can be a particularly challenging symptom to manage at home. Mobile and wireless technology ("Smart Health") has significant potential to support patients with cancer and their family caregivers and empower them to safely and effectively manage cancer pain. OBJECTIVE:This study will deploy a package of sensing technologies, known as Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C), and evaluate its feasibility and acceptability among patients with cancer-family caregiver dyads. Our primary aims are to explore the ability of BESI-C to reliably measure and describe variables relevant to cancer pain in the home setting and to better understand the dyadic effect of pain between patients and family caregivers. A secondary objective is to explore how to best share collected data among key stakeholders (patients, caregivers, and health care providers). METHODS:This descriptive two-year pilot study will include dyads of patients with advanced cancer and their primary family caregivers recruited from an academic medical center outpatient palliative care clinic. Physiological (eg, heart rate, activity) and room-level environmental variables (ambient temperature, humidity, barometric pressure, light, and noise) will be continuously monitored and collected. Behavioral and experiential variables will be actively collected when the caregiver or patient interacts with the custom BESI-C app on their respective smart watch to mark and describe pain events and answer brief, daily ecological momentary assessment surveys. Preliminary analysis will explore the ability of the sensing modalities to infer and detect pain events. Feasibility will be assessed by logistic barriers related to in-home deployment, technical failures related to data capture and fidelity, smart watch wearability issues, and patient recruitment and attrition rates. Acceptability will be measured by dyad perceptions and receptivity to BESI-C through a brief, structured interview and surveys conducted at deployment completion. We will also review summaries of dyad data with participants and health care providers to seek their input regarding data display and content. RESULTS:Recruitment began in July 2019 and is in progress. We anticipate the preliminary results to be available by summer 2021. CONCLUSIONS:BESI-C has significant potential to monitor and predict pain while concurrently enhancing communication, self-efficacy, safety, and quality of life for patients and family caregivers coping with serious illness such as cancer. This exploratory research offers a novel approach to deliver personalized symptom management strategies, improve patient and caregiver outcomes, and reduce disparities in access to pain management and palliative care services. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):DERR1-10.2196/16178.

Dataset Information

Family dynamics in a multi-ethnic Asian society: comparison of elderly CKD patients and their family caregivers experience with medical decision making for managing end stage kidney disease.

Publications

Family dynamics in a multi-ethnic Asian society: comparison of elderly CKD patients and their family caregivers experience with medical decision making for managing end stage kidney disease.

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