Assessing the internal consistency and temporal stability of advance directives generated by an interactive, online computer program.
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ABSTRACT:
SUBMITTER: Schubart JR
PROVIDER: S-EPMC6858832 | biostudies-literature | 2017 Mar
REPOSITORIES: biostudies-literature
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Assessing the internal consistency and temporal stability of advance directives generated by an interactive, online computer program.
Schubart Jane R JR Camacho Fabian F Green Michael J MJ Rush Kimberly A KA Levi Benjamin H BH
BMJ supportive & palliative care 20150305 1
<h4>Objective</h4>Evaluate the internal consistency and temporal stability of advance directives (ADs) generated by an interactive, online computer program.<h4>Methods</h4>33 participants completed the program at three visits, 2 weeks apart. Agreement rates were calculated for the <i>General Wishes</i> component of the AD. The test-retest method was used to examine the temporal stability of the <i>Specific Wish for Treatment</i> component which contains five clinical scenarios.<h4>Results</h4><i ...[more]
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Project description:BackgroundCurrent, ongoing national surveys do not include questions about end-of-life (EOL) issues. In particular, population-based data are lacking regarding the factors associated with advance directive completion.PurposeTo characterize U.S. adults who did and did not have an advance directive and examine factors associated with their completion, such as the presence of a chronic condition and regular source of health care.MethodsData were analyzed in 2013 from adults aged 18 years and older who participated in the 2009 or 2010 HealthStyles Survey, a mail panel survey designed to be representative of the U.S. population. Likelihood ratio tests were used to examine the associations between advance directive completion and demographic and socioeconomic variables (education, income, employment status); presence of a chronic condition; regular source of health care; and self-reported EOL concerns or discussions. Multiple logistic regression analyses identified independent predictors related to advance directive completion.ResultsOf the 7946 respondents, 26.3% had an advance directive. The most frequently reported reason for not having one was lack of awareness. Advance directive completion was associated with older age, more education, and higher income and was less frequent among non-white respondents. Respondents with advance directives also were more likely to report having a chronic disease and a regular source of care. Advance directives were less frequent among those who reported not knowing if they had an EOL concern.ConclusionsThese data indicate racial and educational disparities in advance directive completion and highlight the need for education about their role in facilitating EOL decisions.
| S-EPMC4540332 | biostudies-literature
Project description:BACKGROUND:An advance directive is a document specifying a person's preferences for treatment, should he or she lose capacity to make such decisions in the future. They have been used in end-of-life settings to direct care but should be well suited to the mental health setting. OBJECTIVES:To examine the effects of advance treatment directives for people with severe mental illness. SEARCH STRATEGY:We searched the Cochrane Schizophrenia Group's Register (February 2008), the Cochrane Library (Issue 1 2008), BIOSIS (1985 to February 2008), CINAHL (1982 to February 2008), EMBASE (1980 to February 2008), MEDLINE (1966 to February 2008), PsycINFO (1872 to February 2008), as well as SCISEARCH and Google - Internet search engine (February 2008). We inspected relevant references and contacted first authors of included studies. SELECTION CRITERIA:We included all randomised controlled trials (RCTs), involving adults with severe mental illness, comparing any form of advance directive with standard care for health service and clinical outcomes. DATA COLLECTION AND ANALYSIS:We extracted data independently. For homogenous dichotomous data we calculated fixed-effect relative risk (RR) and 95% confidence intervals (CI) on an intention-to-treat basis. For continuous data, we calculated weighted mean differences (WMD) and their 95% confidence interval again using a fixed-effect model. MAIN RESULTS:We were able to include two trials involving 321 people with severe mental illnesses. There was no significant difference in hospital admission (n=160, 1 RCT, RR 0.69 0.5 to 1.0), or number of psychiatric outpatient attendances between participants given advanced treatment directives or usual care. Similarly, no significant differences were found for compliance with treatment, self harm or number of arrests. Participants given advanced treatment directives needed less use of social workers time (n=160, 1 RCT, WMD -106.00 CI -156.2 to -55.8) than the usual care group, and violent acts were also lower in the advanced directives group (n=160, 1 RCT, RR 0.27 CI 0.1 to 0.9, NNT 8 CI 6 to 92). The number of people leaving the study early were not different between groups (n=321, 2 RCTs, RR 0.92 CI 0.6 to 1.6). AUTHORS' CONCLUSIONS:There are too few data available to make definitive recommendations. More intensive forms of advance directive appear to show promise, but currently practice must be guided by evidence other than that derived from randomised trials. More trials are indicated to determine whether higher intensity interventions, such as joint crisis planning, have an effect on outcomes of clinical relevance.
| S-EPMC4161493 | biostudies-other
Project description:BackgroundCompletion of Advance Directives (ADs), being financial and healthcare proxy or instructional documents, is relatively uncommon in Australia. Efforts to increase completion rates include online education and prompting which past literature suggests may be effective. The aim of this randomized controlled trial was to assess computer-based online AD information and email prompting for facilitating completion of ADs by Australian Baby Boomers (b.1946-1965) as well as factors which may impede or assist completion of these documents by this generation when using the online environment.MethodsTwo hundred eighty-two men and women aged 49-68 years at the time of the trial were randomly assigned to one of 3 intervention groups: education module only; email prompt only; email prompt and education module; and a control group with no education module and no email prompt. The randomized controlled trial was undertaken in participants' location of choice. Randomization and allocation to trial group were carried out by a central computer system. The primary analysis was based on a final total of 189 participants who completed the trial (n = 52 education module only; n = 44 email prompt only; n = 46 email prompt and education module; and n = 47 control). The primary outcome was the number of individuals in any group completing any of the 4 legal ADs in South Australia within 12 months or less from entry into the trial. Frequency analysis was conducted on secondary outcomes such as reasons for non-completion.ResultsMean follow-up post-intervention at 12 months showed that 7% of overall participants completed one or more of the 4 legal ADs but without significant difference between groups (delta = 1%, p = .48 Prompt/Non-Prompt groups, delta = 5%, p = .44 education/non-education groups). Reasons offered for non-completion were too busy (26%) and/or it wasn't the right time (21%).ConclusionOur results suggest that neither email prompting nor provision of additional educational material online were sufficient to significantly impact AD completion rates for this generational cohort. Research with this cohort over longer periods of time exploring online preferences for engagement with ADs as they age may provide better insight into using this environment for ADs with this group.Trial registrationAustralian New Zealand Clinical Trials Registry ACTRN12616000425493 .
| S-EPMC5576351 | biostudies-literature
Project description:Pharmit (http://pharmit.csb.pitt.edu) is an open-source online resource that allows users to interactively search libraries of millions compounds as part of a structure-based drug discovery workflow. Here we describe the systems-level implementation decisions made in designing Pharmit that, when combined with novel sub-linear time search algorithms, allow it to screen millions of molecules in seconds. The key concepts are to maximize parallelism while minimizing intra-thread communication, optimize data layout for sequential processing, and efficiently manage memory allocation. We describe how these concepts are applied to the cheminformatic data inherent to Pharmit and discuss limitations and possible future directions.
| S-EPMC8049614 | biostudies-literature
Project description:BackgroundRecent discussions about health care reform have raised questions regarding the value of advance directives.MethodsWe used data from survey proxies in the Health and Retirement Study involving adults 60 years of age or older who had died between 2000 and 2006 to determine the prevalence of the need for decision making and lost decision-making capacity and to test the association between preferences documented in advance directives and outcomes of surrogate decision making.ResultsOf 3746 subjects, 42.5% required decision making, of whom 70.3% lacked decision-making capacity and 67.6% of those subjects, in turn, had advance directives. Subjects who had living wills were more likely to want limited care (92.7%) or comfort care (96.2%) than all care possible (1.9%); 83.2% of subjects who requested limited care and 97.1% of subjects who requested comfort care received care consistent with their preferences. Among the 10 subjects who requested all care possible, only 5 received it; however, subjects who requested all care possible were far more likely to receive aggressive care as compared with those who did not request it (adjusted odds ratio, 22.62; 95% confidence interval [CI], 4.45 to 115.00). Subjects with living wills were less likely to receive all care possible (adjusted odds ratio, 0.33; 95% CI, 0.19 to 0.56) than were subjects without living wills. Subjects who had assigned a durable power of attorney for health care were less likely to die in a hospital (adjusted odds ratio, 0.72; 95% CI, 0.55 to 0.93) or receive all care possible (adjusted odds ratio, 0.54; 95% CI, 0.34 to 0.86) than were subjects who had not assigned a durable power of attorney for health care.ConclusionsBetween 2000 and 2006, many elderly Americans needed decision making near the end of life at a time when most lacked the capacity to make decisions. Patients who had prepared advance directives received care that was strongly associated with their preferences. These findings support the continued use of advance directives.
| S-EPMC2880881 | biostudies-literature
Project description:Advance directives are a sensitive issue among traditional Chinese people, who usually refrain from mentioning this topic until it is imperative. Medical decisions for cancer patients are made by their families, and these decisions might violate patients' personal will.This study aimed to examine the acceptance of advance directives among Chinese cancer patients and their families and patient participation in this procedure and, finally, to analyze the moral risk involved.While 246 patients and their family members refused official discussion of an advance directive, the remaining 166 patients and their families accepted the concept of an advance directive and signed a document agreeing to give up invasive treatment when the anti-cancer treatment was terminated. Of these, only 24 patients participated in the decision making. For 101 patients, anti-cancer therapy was ended prematurely with as many as 37 patients not told about their potential loss of health interests.Participants were 412 adult cancer patients from 9 leading hospitals across China. An advance directive was introduced to the main decision makers for each patient; if they wished to sign it, the advance directive would be systematically discussed. A questionnaire was given to the oncologists in charge of each patient to evaluate the interaction between families and patients, patients' awareness of their disease, and participation in an advance directive.Advance directives were not widely accepted among Chinese cancer patients unless anti-cancer therapy was terminated. Most cancer patients were excluded from the discussion of an advance directive.
| S-EPMC5542195 | biostudies-other
Project description:BackgroundAlthough advance directives (AD) have been implemented for years in western countries, the concept of AD is not promoted extensively in eastern countries. In this study we evaluate a program to systematically conduct advance care planning (ACP) communication for hospitalized patients in Taiwan and identify the factors associated with AD completion.MethodsIn this retrospective evaluation of a clinical ACP program, we identified adult patients with chronic life-limiting illness admitted to Taipei City Hospital between April 2015 and January 2016. Trained healthcare providers held an ACP meeting to discuss patients' preference regarding end-of-life care and AD completion. A multiple logistic regression was performed to determine the factors associated with the AD completion.ResultsA total of 2878 patients were determined to be eligible for ACP during the study, among which 1798 (62.5%) completed ACP and data was available for 1411 patients (49.1%). Of the 1411 patients who received ACP communication with complete data, the rate of AD completion was 82.6%. The overall mean (SD) age was 78.2 (14.4) years. Adjusting for other variables, AD completion was associated with patients aged ≥ 85 years [adjusted odds ratio (AOR) = 1.80, 95% CI 1.21-2.67], critical illness (AOR = 1.17, 95% CI 1.06-1.30), and social workers participating in ACP meetings (AOR = 1.74, 95% CI 1.24-2.45).ConclusionThe majority of inpatients with chronic life-limiting illness had ACP communication as part of this ACP program and over 80% completed an AD. Our study demonstrates the feasibility of implementing ACP discussion in East Asia and suggests that social workers may be an important component of ACP communication with patients.
| S-EPMC6034783 | biostudies-literature
Project description:BackgroundAdvance care planning, including advance directives, is an important tool that allows patients to express their preferences for care if they are no longer able to express themselves. We developed Accordons-nous, a smartphone app that informs patients about advance care planning and advance directives, facilitates communication on these sensitive topics, and helps patients express their values and preferences for care.ObjectiveThe first objective of this study is to conduct a usability test of this app. The second objective is to collect users' critical opinions on the usability and relevance of the tool.MethodsWe conducted a usability test by means of a think-aloud method, asking 10 representative patients to complete 7 browsing tasks. We double coded the filmed sessions to obtain descriptive data on task completion (with or without help), time spent, number of clicks, and the types of problems encountered. We assessed the severity of the problems encountered and identified the modifications needed to address these problems. We evaluated the readability of the app using Scolarius, a French equivalent of the Flesch Reading Ease test. By means of a posttest questionnaire, we asked participants to assess the app's usability (System Usability Scale), relevance (Mobile App Rating Scale, section F), and whether they would recommend the app to the target groups: patients, health professionals, and patients' caring relatives.ResultsParticipants completed the 7 think-aloud tasks in 80% (56/70) of the cases without any help from the experimenter, in 16% (11/70) of the cases with some help, and failed in 4% (3/70) of the cases. The analysis of failures and difficulties encountered revealed a series of major usability problems that could be addressed with minor modifications to the app. Accordons-nous obtained high scores on readability (overall score of 87.4 on Scolarius test, corresponding to elementary school level), usability (85.3/100 on System Usability Scale test), relevance (4.3/5 on the Mobile App Rating Scale, section F), and overall subjective endorsement on 3 I would recommend questions (4.7/5).ConclusionsThis usability test helped us make the final changes to our app before its official launch.
| S-EPMC9069299 | biostudies-literature
Project description:BackgroundAccordons-nous, a smartphone app, was developed to support patients in the advance care planning (ACP) process. The app raises awareness and facilitates communication on this sensitive topic. It helps patients express their values and preferences for care and write their advance directives (AD).ObjectiveMeasure the impact of distributing Accordons-nous on patients' propensity to engage in the ACP process, compared with the distribution of a leaflet. A secondary objective was to test the effect of socio-demographic factors (age, health status, gender, level of education) on propensity to engage in ACP.MethodsPre-post randomized control study. Participants were patients approached in medical waiting rooms. They received the app (treatment) or an information leaflet (control). They responded to two questionnaires: one at recruitment and a second 3-4 weeks later. Improvement on four variables relevant to ACP was measured: reported contemplation of an event relevant to ACP; decision about treatment in case of that event; discussion about it with relatives or health care professionals; writing advance directives. Statistical analysis included between-group comparisons of pre-post differences with 2-sample tests for equality of proportions and logistic regression models.ResultsFour hundred seventy three participants were recruited and full responses obtained from 312. Overall, the intervention (control and treatment together) had a positive effect on the mean reported ACP engagement for all variables: new or renewed contemplation 54%; increase in decision 8%, discussion 11%, and writing 1%, compared to the baseline. Compared to the control (leaflet), the treatment group (app) had a larger effect size for all variables: between-group difference in contemplation + 11% (logistic regression, p = .05), decision + 1% (but p > .05 on this variable), discussion + 5% (p = .05), and writing AD + 5% (p = .03). Moreover, greater age was positively correlated with having written AD at inclusion (21% among retired compared to 2% among young adults) and with the propensity to write AD after our intervention (logistic regression, p = .001). Other factors tested (frequency of consultations, gender, level of education) had no effect on participants' ACP engagement.ConclusionsWhen distributed without specific counselling, the tool increased reported ACP engagement, although effect sizes remain modest. Further studies are needed to investigate whether the app could generate greater ACP engagement if used by professionals in dedicated ACP consultations.
| S-EPMC10233869 | biostudies-literature
Project description:BACKGROUND: In Japan, discussion concerning advance directives (ADs) has been on the rise during the past decade. ADs are one method proposed to facilitate the process of communication among patients, families and health care providers regarding the plan of care of a patient who is no longer capable of communicating. In this paper, we report the results of the first in-depth survey on the general population concerning the preferences and use of ADs in Japan. METHOD: A self-administered questionnaire was sent via mail to a stratified random sampling of 560 residents listed in the residential registry of one district of Tokyo, Japan (n = 165,567). Association between correlating factors and specific preferences toward ADs was assessed using contingency table bivariate analysis and multivariate regression model to estimate independent contribution. RESULTS: Of the 560 questionnaires sent out, a total of 425 participants took part in the survey yielding a response rate of 75.9 %. The results of the present study indicate that: 1) the most important components to be addressed are the specifics of medical treatment at the end of life stage and disclosure of diagnosis and prognosis; 2) the majority of participants found it suitable to express their directives by word to family and/or physician and not by written documentation; 3) there is no strong need for legal measures in setting up an AD; 4) it is permissible for family and physician to loosely interpret one's directives; 5) the most suitable proxy is considered to be a family member, relative, or spouse. Multivariate analysis found the following five factors as significantly associated with preferences: 1) awareness regarding living wills, 2) experience with the use of ADs, 3) preferences for end-of-life treatment, 4) preferences for information disclosure, and 5) intentions of creating a will. CONCLUSIONS: Written ADs might be useful in the Japanese setting when the individual either wishes: 1) to not provide a lot of leeway to surrogates and/or caregivers, and/or 2) to ensure his or her directives in the cases of terminal illness, brain death, and pain treatment, as well as regarding information disclosure.
| S-EPMC272930 | biostudies-literature