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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:BACKGROUND:Waiting times for elective treatments, including elective surgery, are a source of public concern and therefore are on policy makers' agenda. The long waiting times have often been tackled through the allocation of additional resources, in an attempt to reduce them, but results are not straightforward. At the same time, researchers have reported wide geographical variations in the provision of elective care not driven by patient needs or preferences but by other factors. The paper analyses the relationship between waiting times and treatment rates for nine high-volume elective surgical procedures in order to support decision making regarding the availability of these services for the citizens. Using the framework already proposed for the diagnostic services, we identify different patterns that can be followed to align the supply with patient needs in the Italian context. METHODS:After measuring the waiting times and the treatment rates for nine procedures in the 34 districts in Tuscany, we performed correlation analyses. Then, we plotted the results in a matrix cross-checking waiting times and rates. By doing so, we identified four different contexts that require a second step analysis to tackle unwarranted geographical variations and ensure timely care to patients. Finally, for each district and elective surgical procedure, we measured the economic impact of the different treatment rates in order to evaluate whether there are any supply criticalities and eventually some room for maneuver. We also included active and passive mobility of patients. RESULTS:The results show a high degree of variation both in treatment rates and waiting times, especially for the orthopaedic procedures: knee replacement, knee arthroscopy and hip replacement. The analysis performed for the nine interventions shows that the 34 districts are in varying positions in the waiting time-treatment rate matrix, suggesting that there is no straightforward relationship between rates and waiting times. Each combination in the matrix may have different determinants that require healthcare managers to adopt diversified strategies. The decision making process needs to be supported by a two-level analysis: the first one to put in place the matrix that cross-checks waiting times and treatment rates, the second one to analyse the characteristics of each quadrant and the improvement actions that can be proposed. CONCLUSIONS:In Italy, waiting times in elective surgical services are a main policy issue with a relevant geographical variation. Our analysis reveals that this variation is due to multiple elements. In order to avoid simplistic approaches that do not solve the problem but often lead to increased expenditure, policy makers and healthcare managers should follow a two-step strategy firstly identifying the type of context and secondly analysing the impact of elements such as resource productivity, resource availability, patients' preferences and care appropriateness. Only in some cases it is required to increase the service supply.

Project description:Rationale & objectiveChronic kidney disease (CKD) care is often fragmented across multiple health care providers. It is unclear whether patients rely mostly on their nephrologists or non-nephrologist providers for medical care, including CKD treatment and advice.Study designCross-sectional study.Setting & participantsAdults receiving nephrology care at CKD clinics in Pennsylvania.PredictorsFrequency, duration, and patient-centeredness (range, 1 [least] to 4 [most]) of participants' nephrology care.OutcomeParticipants' reliance on nephrologists, primary care providers, or other specialists for medical care, including CKD treatment and advice.Analytical approachMultivariable logistic regression to quantify associations between participants' reliance on their nephrologists (vs other providers) and their demographics, comorbid conditions, kidney function, and nephrology care.ResultsAmong 1,412 patients in clinics targeted for the study, 676 (48%) participated. Among these, 453 (67%) were eligible for this analysis. Mean age was 71 (SD, 12) years, 59% were women, 97% were white, and 65% were retired. Participants were in nephrology care for a median of 3.8 (IQR, 2.0-6.6) years and completed a median of 4 (IQR, 3-5) nephrology appointments in the past 2 years. Half (56%) the participants relied primarily on their nephrologists, while 23% relied on primary care providers, 18% relied on all providers equally, and 3% relied on other specialists. Participants' adjusted odds of relying on their nephrologists were higher for those in nephrology care for longer (OR, 1.08 [95% CI, 1.02-1.15]; P = 0.02), those who completed more nephrology visits in the previous 2 years (OR, 1.16 [95% CI, 1.05-1.29]; P = 0.005), and those who perceived their last interaction with their nephrologists as more patient-centered (OR, 2.63 [95% CI, 1.70-4.09]; P < 0.001).LimitationsSingle health system study.ConclusionsMany nephrology patients relied on non-nephrologist providers for medical care. Longitudinal patient-centered nephrology care may encourage more patients to follow nephrologists' recommendations.

Project description:One of the toughest decisions faced by elderly people is whether to stay at home or move to a care facility. This study seeks to evaluate the impact of training interprofessional home-care teams in shared decision making combined with a decision aid on the proportion of elderly people who report being active in the decision-making process regarding whether to stay at home or move to a care facility.We propose a multicenter cluster randomized trial conducted with home-care interprofessional teams in the Province of Quebec with 2 data collection phases: before and after the intervention. Units of randomization will be centers for primary healthcare and social services. We will enroll 16 of these and ask each to provide one home-care interprofessional team involved in decisions and care planning with eligible clients. Clients will be included if they i) are aged ?65; ii) are receiving care from the participating home-care interprofessional team; iii) have faced the decision about staying at home or moving to a care facility in the past 3 to 6 months; iv) are able to read, understand and write French or English; and v) are able to give informed consent. If clients are unable to provide informed consent, their primary caregiver who was involved in the decision-making process will be eligible to participate. The intervention arm will receive training in shared decision making and use of a decision aid. The control arm will receive 'usual care'. The primary outcome of interest is the assumed role in the decision-making process as assessed in clients or caregivers with a modified version of the Control Preferences Scale. Multilevel modeling will be used to take the hierarchical structure of the data into account. The study has obtained full ethical approval. The trial will comply with CONSORT guidelines adapted for cluster randomized trials.Home care is a rapidly growing sector and this study will lay the foundations of a national strategy to ensure that IP home-care teams provide the highest quality of care for seriously ill elderly people and support for their families.ClinicalTrials.gov NCT02244359 (registered 18 September 2014).

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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