Enabling Patient Choice: The "Deciding Not to Decide" Option for Older Adults Facing Dialysis Decisions.
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ABSTRACT:
SUBMITTER: Saeed F
PROVIDER: S-EPMC9063883 | biostudies-literature | 2022 May
REPOSITORIES: biostudies-literature
Publications
Enabling Patient Choice: The "Deciding Not to Decide" Option for Older Adults Facing Dialysis Decisions.
Saeed Fahad F Moss Alvin H AH Duberstein Paul R PR Fiscella Kevin A KA
Journal of the American Society of Nephrology : JASN 20220215 5
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Project description:Understanding the cognitive and neural processes that underlie human decision making requires the successful prediction of how, but also of when, people choose. Sequential sampling models (SSMs) have greatly advanced the decision sciences by assuming decisions to emerge from a bounded evidence accumulation process so that response times (RTs) become predictable. Here, we demonstrate a difficulty of SSMs that occurs when people are not forced to respond at once but are allowed to sample information sequentially: The decision maker might decide to delay the choice and terminate the accumulation process temporarily, a scenario not accounted for by the standard SSM approach. We developed several SSMs for predicting RTs from two independent samples of an electroencephalography (EEG) and a functional magnetic resonance imaging (fMRI) study. In these studies, participants bought or rejected fictitious stocks based on sequentially presented cues and were free to respond at any time. Standard SSM implementations did not describe RT distributions adequately. However, by adding a mechanism for postponing decisions to the model we obtained an accurate fit to the data. Time-frequency analysis of EEG data revealed alternating states of de- and increasing oscillatory power in beta-band frequencies (14-30 Hz), indicating that responses were repeatedly prepared and inhibited and thus lending further support for the existence of a decision not to decide. Finally, the extended model accounted for the results of an adapted version of our paradigm in which participants had to press a button for sampling more information. Our results show how computational modeling of decisions and RTs support a deeper understanding of the hidden dynamics in cognition.
| S-EPMC3814623 | biostudies-literature
Project description:In a companion paper [1], we have presented a generic approach for inferring how subjects make optimal decisions under uncertainty. From a Bayesian decision theoretic perspective, uncertain representations correspond to "posterior" beliefs, which result from integrating (sensory) information with subjective "prior" beliefs. Preferences and goals are encoded through a "loss" (or "utility") function, which measures the cost incurred by making any admissible decision for any given (hidden or unknown) state of the world. By assuming that subjects make optimal decisions on the basis of updated (posterior) beliefs and utility (loss) functions, one can evaluate the likelihood of observed behaviour. In this paper, we describe a concrete implementation of this meta-Bayesian approach (i.e. a Bayesian treatment of Bayesian decision theoretic predictions) and demonstrate its utility by applying it to both simulated and empirical reaction time data from an associative learning task. Here, inter-trial variability in reaction times is modelled as reflecting the dynamics of the subjects' internal recognition process, i.e. the updating of representations (posterior densities) of hidden states over trials while subjects learn probabilistic audio-visual associations. We use this paradigm to demonstrate that our meta-Bayesian framework allows for (i) probabilistic inference on the dynamics of the subject's representation of environmental states, and for (ii) model selection to disambiguate between alternative preferences (loss functions) human subjects could employ when dealing with trade-offs, such as between speed and accuracy. Finally, we illustrate how our approach can be used to quantify subjective beliefs and preferences that underlie inter-individual differences in behaviour.
| S-EPMC3001882 | biostudies-literature
Project description:BackgroundOlder patients on dialysis may not have optimal outcomes, particularly with regards to quality of life. Existing research is focused mainly on survival, with limited information about other outcomes. Such information can help in shared decision-making around dialysis initiation; it can also be used to improve outcomes in patients established on dialysis. We used qualitative research methods to explore patient perspectives regarding their experience and outcomes with dialysis.MethodsSemi-structured interviews with participants aged ≥70, receiving dialysis at a regional Australian hospital, were recorded and transcribed. From participants' responses, we identified descriptive themes using a phenomenological approach, with verification by two researchers. Factors affecting outcomes were derived reflexively from these themes.ResultsSeventeen interviews were analysed prior to saturation of themes. Participants (12 on haemodialysis, 5 on peritoneal dialysis) had spent an average of 4.3 years on dialysis. There were 11 males and 6 females, with mean age 76.2 years (range 70 to 83). Experiences of dialysis were described across four domains - the self, the body, effects on daily life and the influences of others; yielding themes of (i) responses to loss (of time, autonomy, previous life), (ii) responses to uncertainty (variable symptoms; unpredictable future; dependence on others), (iii) acceptance / adaptation (to life on dialysis; to ageing) and (iv) the role of relationships / support (family, friends and clinicians).ConclusionsOlder patients experience the effects of dialysis across multiple domains in their lives. They endure feelings of loss and persistent uncertainty, but may also adapt successfully to their new circumstances, aided by the support they receive from family, health professionals and institutions. From these insights, we have suggested practical measures to improve outcomes in older patients.
| S-EPMC6988330 | biostudies-literature
Project description:Background and objectivesImproved knowledge about factors that influence patient choices when considering dialysis modality could facilitate health care interventions to increase rates of home dialysis. We aimed to quantify the attributes of dialysis care and the tradeoffs that patients consider when making decisions about dialysis modalities.Design, setting, participants, & measurementsWe conducted a prospective, discrete choice experiment survey with random parameter logit analysis to quantify preferences and tradeoffs for attributes of dialysis treatment in 143 adult patients with CKD expected to require RRT within 12 months (predialysis). The attributes included schedule flexibility, patient out of pocket costs, subsidized transport services, level of nursing support, life expectancy, dialysis training time, wellbeing on dialysis, and dialysis schedule (frequency and duration). We reported outcomes using β-coefficients with corresponding odds ratios and 95% confidence intervals for choosing home-based dialysis (peritoneal dialysis or hemodialysis) compared with facility hemodialysis.ResultsHome-based therapies were significantly preferred with the following attributes: longer survival (odds ratio per year, 1.63; 95% confidence interval, 1.25 to 2.12), increased treatment flexibility (odds ratio, 9.22; 95% confidence interval, 2.71 to 31.3), improved wellbeing (odds ratio, 210; 95% confidence interval, 15 to 2489), and more nursing support (odds ratio, 87.3; 95% confidence interval, 3.8 to 2014). Respondents were willing to accept additional out of pocket costs of approximately New Zealand $400 (United States $271) per month (95% confidence interval, New Zealand $333 to $465) to receive increased nursing support. Patients were willing to accept out of pocket costs of New Zealand $223 (United States $151) per month (95% confidence interval, New Zealand $195 to $251) for more treatment flexibility.ConclusionsPatients preferred home dialysis over facility-based care when increased nursing support was available and when longer survival, wellbeing, and flexibility were expected. Sociodemographics, such as age, ethnicity, and income, influenced patient choice.
| S-EPMC5753315 | biostudies-literature
Project description:The Medicare program insures >80% of patients with ESRD in the United States. An emphasis on reducing outpatient dialysis costs has motivated consolidation among dialysis providers, with two for-profit corporations now providing dialysis for >70% of patients. It is unknown whether industry consolidation has affected patients' ability to choose among competing dialysis providers. We identified patients receiving in-center hemodialysis at the start of 2001 and 2011 from the national ESRD registry and ascertained dialysis facility ownership. For each hospital service area, we determined the maximum distance within which 90% of patients traveled to receive dialysis in 2001. We compared the numbers of competing dialysis providers within that same distance between 2001 and 2011. Additionally, we examined the Herfindahl-Hirschman Index, a metric of market concentration ranging from near zero (perfect competition) to one (monopoly) for each hospital service area. Between 2001 and 2011, the number of different uniquely owned competing providers decreased 8%. However, increased facility entry into markets to meet rising demand for care offset the effect of provider consolidation on the number of choices available to patients. The number of dialysis facilities in the United States increased by 54%, and patients experienced an average 10% increase in the number of competing proximate facilities from which they could choose to receive dialysis (P<0.001). Local markets were highly concentrated in both 2001 and 2011 (mean Herfindahl-Hirschman Index =0.46; SD=0.2 for both years), but overall market concentration did not materially change. In summary, a decade of consolidation in the United States dialysis industry did not (on average) limit patient choice or result in more concentrated local markets. However, because dialysis markets remained highly concentrated, it will be important to understand whether market competition affects prices paid by private insurers, access to dialysis care, quality of care, and associated health outcomes.
| S-EPMC5338708 | biostudies-literature
Project description:BackgroundDecisions about solid organ transplantation are complex. Patient decision aids (PDAs) enhance traditional education, by improving knowledge and supporting patients to align their values with treatments. There are increasing numbers of transplantation PDAs, however, it is unclear whether these are effective. We conducted a systematic review of studies assessing the impact of PDA use in transplantation.MethodsWe searched the Cochrane Register of Controlled Trials, CINAHL, EMBASE, MEDLINE, and PsycINFO databases from database inception to October 26, 2020. We included primary studies of solid organ transplantation PDAs defined by the International Patient Decision Aids Standards. All comparators and reported outcomes were included. Mean difference in knowledge (before vs. after) was standardized on a 100-point scale. Pooled-effect for PDAs was calculated and compared to the standard of care for randomized controlled trials (RCTs) and meta-analyzed using random effects. Analysis of all other outcomes was limited due to heterogeneity (PROSPERO registration, CRD42020215940).ResultsSeven thousand four hundred and sixty-three studies were screened, 163 underwent full-text review, and 15 studies with 4278 participants were included. Nine studies were RCTs. Seven RCTs assessed knowledge; all demonstrated increased knowledge with PDA use (mean difference, 8.01;95%CI 4.69-11.34, p < .00001). There were many other outcomes, including behavior and acceptability, but these were too heterogenous and infrequently assessed for meaningful synthesis.ConclusionsThis review found that PDAs increase knowledge compared to standard education, though the effect size is small. PDAs are mostly considered acceptable; however, it is difficult to determine whether they improve other decision-making components due to the limited evidence about non-knowledge-based outcomes.
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Project description:BackgroundPatients with advanced neuroendocrine tumors (NETs) have multiple treatment options. Ideally, treatment decisions are shared between physician and patient; however, previous studies suggest that oncologists and patients place different value on treatment attributes such as adverse event (AE) rates. High-quality information on NET patient treatment preferences may facilitate patient-centered decision making by helping clinicians understand patient priorities.MethodsThis study used 2 discrete choice experiments (DCE) to elicit preferences of NET patients regarding advanced midgut and pancreatic NET (pNET) treatments. The DCEs used the "potentially all pairwise rankings of all possible alternatives" (PAPRIKA) method. The primary objective was to determine relative utility rankings for treatment attributes, including progression-free survival (PFS), treatment modality, and AE rates. Ranking of attribute profiles matching specific treatments was also determined. Levels for treatment attributes were obtained from randomized clinical trial data of NET treatments.ResultsOne hundred and 10 participants completed the midgut NET DCE, and 132 completed the pNET DCE. Longer PFS was the highest ranked treatment attribute in 64.5% of participants in the midgut NET DCE, and in 59% in the pNET DCE. Approximately, 40% of participants in both scenarios prioritized lower AE rates or less invasive treatment modalities over PFS. Ranking of treatment profiles in the midgut NET scenario identified 60.9% of participants favoring peptide receptor radionuclide therapy (PRRT), and 30.0% somatostatin analogue dose escalation.ConclusionNET patients have heterogeneous priorities when choosing between treatment options based on the results of 2 independent DCEs. These results highlight the importance of shared decision making for NET patients.
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Project description:The dopamine system is thought to be involved in making decisions about reward. Here we recorded from the ventral tegmental area in rats learning to choose between differently delayed and sized rewards. As expected, the activity of many putative dopamine neurons reflected reward prediction errors, changing when the value of the reward increased or decreased unexpectedly. During learning, neural responses to reward in these neurons waned and responses to cues that predicted reward emerged. Notably, this cue-evoked activity varied with size and delay. Moreover, when rats were given a choice between two differently valued outcomes, the activity of the neurons initially reflected the more valuable option, even when it was not subsequently selected.
| S-EPMC2562672 | biostudies-literature
Project description:BackgroundWritten resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical issues. The Caring Decisions handbook and website were developed to fill these gaps.AimWe discuss the development of the resources, modification after reviewer feedback and findings from initial pilot implementation.DesignA targeted literature review-to identify resources and factors that impact on parental EoL decision-making; development phase-guided by the literature and the researchers' expertise; consultation process-comprised a multi-disciplinary panel of experts and parents; pilot evaluation study-hard-copy handbook was distributed as part of routine care at an Australian Children's Hospital.Setting/participantsTwelve experts and parents formed the consultation panel. Eight parents of children with life-limiting conditions and clinicians were interviewed in the pilot study.ResultsNumerous factors supporting/impeding EoL decisions were identified. Caring Decisions addressed issues identified in the literature and by the multidisciplinary research team. The consultation panel provided overwhelmingly positive feedback. Pilot study parents found the resources helpful and comforting. Most clinicians viewed the resources as very beneficial to parents and identified them as ideal for training purposes.ConclusionsThe development of the resources addressed many of the gaps in existing resources. The consultation process and the pilot study suggest these resources could be of significant benefit to parents and clinicians.
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Project description: Not available
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