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The stability of care preferences following acute illness: a mixed methods prospective cohort study of frail older people

ABSTRACT: Background Patient preferences are integral to person-centred care, but preference stability is poorly understood in older people, who may experience fluctuant illness trajectories with episodes of acute illness. We aimed to describe, and explore influences on the stability of care preferences in frail older people following recent acute illness. Methods Mixed-methods prospective cohort study with dominant qualitative component, parallel data collection and six-month follow up. Study population: age???65, Rockwood Clinical Frailty score???5, recent acute illness requiring acute assessment/hospitalisation. Participants rated the importance of six preferences (to extend life, improve quality of life, remain independent, be comfortable, support ‘those close to me’, and stay out of hospital) at baseline, 12 and 24?weeks using a 0–4 scale, and ranked the most important. A maximum-variation sub-sample additionally contributed serial in-depth qualitative interviews. We described preference stability using frequencies and proportions, and undertook thematic analysis to explore influences on preference stability. Results 90/192 (45%) of potential participants consented. 82/90 (91%) answered the baseline questionnaire; median age 84, 63% female. Seventeen undertook qualitative interviews. Most participants consistently rated five of the six preferences as important (range 68–89%). ‘Extend life’ was rated important by fewer participants (32–43%). Importance ratings were stable in 61–86% of cases. The preference ranked most important was unstable in 82% of participants. Preference stability was supported by five influences: the presence of family support; both positive or negative care experiences; preferences being concordant with underlying values; where there was slowness of recovery from illness; and when preferences linked to long term goals. Preference change was related to changes in health awareness, or life events; if preferences were specific to a particular context, or multiple concurrent preferences existed, these were also more liable to change. Conclusions Preferences were largely stable following acute illness. Stability was reinforced by care experiences and the presence of family support. Where preferences were unstable, this usually related to changing health awareness. Consideration of these influences during preference elicitation or advance care planning will support delivery of responsive care to meet preferences. Obtaining longer-term data across diverse ethnic groups is needed in future research.

SUBMITTER: Etkind S

PROVIDER: S-EPMC7523327 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Project description:BackgroundInformal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage.ObjectiveThis study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden).MethodsA systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions.ResultsFrom a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer's wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare.ConclusionsThe review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.

Project description:ObjectivesDeprescribing has been proposed as a way to reduce polypharmacy in frail older people. We aimed to reduce the number of medicines consumed by people living in residential aged care facilities (RACF). Secondary objectives were to explore the effect of deprescribing on survival, falls, fractures, hospital admissions, cognitive, physical, and bowel function, quality of life, and sleep.MethodsNinety-five people aged over 65 years living in four RACF in rural mid-west Western Australia were randomised in an open study. The intervention group (n = 47) received a deprescribing intervention, the planned cessation of non-beneficial medicines. The control group (n = 48) received usual care. Participants were monitored for twelve months from randomisation. Primary outcome was change in the mean number of unique regular medicines. All outcomes were assessed at baseline, six, and twelve months.ResultsStudy participants had a mean age of 84.3 ± 6.9 years and 52% were female. Intervention group participants consumed 9.6 ± 5.0 and control group participants consumed 9.5 ± 3.6 unique regular medicines at baseline. Of the 348 medicines targeted for deprescribing (7.4 ± 3.8 per person, 78% of regular medicines), 207 medicines (4.4 ± 3.4 per person, 59% of targeted medicines) were successfully discontinued. The mean change in number of regular medicines at 12 months was -1.9 ± 4.1 in intervention group participants and +0.1 ± 3.5 in control group participants (estimated difference 2.0 ± 0.9, 95%CI 0.08, 3.8, p = 0.04). Twelve intervention participants and 19 control participants died within 12 months of randomisation (26% versus 40% mortality, p = 0.16, HR 0.60, 95%CI 0.30 to 1.22) There were no significant differences between groups in other secondary outcomes. The main limitations of this study were the open design and small participant numbers.ConclusionsDeprescribing reduced the number of regular medicines consumed by frail older people living in residential care with no significant adverse effects on survival or other clinical outcomes.Trial registrationAustralian New Zealand Clinical Trials Registry ACTRN12611000370909.

Project description:ObjectiveTo explore values and preferences towards medical cannabis among people living with chronic pain.DesignMixed-methods systematic review.Data sourcesWe searched MEDLINE, EMBASE and PsycINFO from inception to 17 March 2020.Study selectionPairs of reviewers independently screened search results and included quantitative, qualitative and mixed-methods studies reporting values and preferences towards medical cannabis among people living with chronic pain.Review methodsWe analysed data using meta-narrative synthesis (quantitative findings were qualitised) and tabulated review findings according to identified themes. We used the Grading of Recommendations Assessment, Development and Evaluation approach to assess certainty of evidence.ResultsOf 1838 initial records, 15 studies proved eligible for review. High to moderate certainty evidence showed that patient's use of medical cannabis for chronic pain was influenced by both positive (eg, support from friends and family) and negative social factors (eg, stigma surrounding cannabis use). Most patients using medical cannabis favoured products with balanced ratios of tetrahydrocannabinol (THC) and cannabidiol (CBD), or high levels of CBD, but not high THC preparations. Many valued the effectiveness of medical cannabis for symptom management even when experiencing adverse events related to concentration, memory or fatigue. Reducing use of prescription medication was a motivating factor for use of medical cannabis, and concerns regarding addiction, losing control or acting strangely were disincentives. Out-of-pocket costs were a barrier, whereas legalisation of medical cannabis improved access and incentivised use.Low to very low certainty evidence suggested highly variable values towards medical cannabis among people living with chronic pain. Individuals with pain related to life-limiting disease were more willing to use medical cannabis, and preferred oral over inhaled administration.ConclusionsOur findings highlight factors that clinicians should consider when discussing medical cannabis. The variability of patients' values and preferences emphasise the need for shared decision making when considering medical cannabis for chronic pain.

Project description:BackgroundEnd-of-life preferences may change over time, e.g. due to illness progression or life events. Research on stability of end-of-life preferences has largely focused on life-sustaining treatments in seriously ill patients or medical decision-making based on hypothetical illness scenarios and possible treatment options. Few studies focus on community-dwellers in natural settings. The aim of this study was thus to explore if and how community-dwelling, older adults' prioritizations and reasoning about values and preferences for future end-of-life care change over time.MethodsUsing a mixed-methods design, we explored stability of end-of-life preferences in older community-dwelling adults without imminent end-of-life care needs. At two timepoints (T1 and T2), 5.5-12 months apart, 52 individuals discussed what would be important to them at the end-of-life, through open conversations and while using DöBra cards, a Swedish version of GoWish cards. Participants ranked their most important card statements from 1 to 10. Stability in card rankings, i.e. a card recurring in the top-10 ranking at T2 regardless of position, was explored using descriptive statistics and non-parametric analyses. Participants' reasoning about card choices were explored with longitudinal qualitative analysis.ResultsStability between T1 and T2 in the top-10 priorities ranged from 20 to 80%, median 60%. Stability in cards rankings could not be explained by changes in participants' health status, extent of card use (no/little/frequent use) between interviews, or days between T1 and T2, nor was it related to demographic variables. Qualitative analysis showed that consistent reasoning was not always paired with consistency in card choices and changed card choices were not always related to changes in reasoning.ConclusionsLongitudinal exploration combining DöBra card rankings with underlying reasoning about end-of-life preferences over time furthers knowledge on the dynamics between values and preferences in end-of-life decision-making. Individuals' end-of-life preferences in form of card choices were relatively stable over time albeit with large variation between different individuals. However, the values and underlying reasoning that participants used to motivate their choices appeared more stable than ranking of card choices. We thus conclude that concurrent conversation-based exploration is a more comprehensive indicator of end-of-life values and preferences over time than ranking of cards alone.

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The stability of care preferences following acute illness: a mixed methods prospective cohort study of frail older people

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