Challenge of Informing Patient Decision Making

Boothroyd, Lucy J.; Lambert, Laurie; Ducharme, Anique; Guertin, Jason R.; Sas, G.; Charbonneau, Éric; Carrier, Michel; Cecere, Renzo; Morin, Jean; Bogaty, Peter

doi:10.1161/circoutcomes.113.000243

Cited by 14 publications

(7 citation statements)

References 42 publications

(37 reference statements)

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“…There have been other reviews regarding LVAD outcomes 40 ; however, there has been no major attempt at systematically reviewing this data according to accepted scientific standards in a patient-focused manner. Several studies have found that graphical presentation of risks and benefits enhances understanding of statistics for patients and families of varying numeracy and literacy skills.…”

Section: Discussionmentioning

confidence: 99%

Clinical Outcomes After Continuous-Flow Left Ventricular Assist Device

McIlvennan

Magid

Ambardekar

et al. 2014

Circ: Heart Failure

140

101

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Background Conveying the complex trade-offs of continuous-flow left ventricular assist devices (CF LVAD) is challenging, and made more difficult by absence of an evidence summary for the full range of possible outcomes. We aimed to summarize the current evidence on outcomes of CF LVAD. Methods and Results PubMed and Cochrane Library were searched from January 2007–December 2013, supplemented with manual review. Three reviewers independently assessed each study for saliency regarding patient-centered outcomes. Data were summarized in tabular form. Overall study characteristics encouraged inclusion of all indications (destination therapy and bridge to transplant) and prevented meta-analysis. The electronic search identified 465 abstracts, of which 50 met inclusion criteria; manual review added 2 articles in press. The articles included 10 industry-funded trials and registries, 10 multi-center reports, and the remainder single-center observational experiences. Estimated actuarial survival after CF LVAD ranged from 56–87% at 1-year, 43–84% at 2-years, and 47% at 4-years. Improvements in functional class and quality of life were reported, but missing data complicated interpretation. Adverse events were experienced by the majority of patients, but estimates for bleeding, stroke, infection, right heart failure, arrhythmias, and rehospitalizations varied greatly. Conclusions The totality of data for CF LVADs show consistent improvements in survival and quality of life counterbalanced by a range of common complications. While this summary should provide a practical resource for health care provider-led discussions with patients, it highlights the critical need for high-quality patient-centered data collected with standard definitions.

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Section: Discussionmentioning

confidence: 99%

Clinical Outcomes After Continuous-Flow Left Ventricular Assist Device

McIlvennan

Magid

Ambardekar

et al. 2014

Circ: Heart Failure

140

101

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“…In order to improve quality of care, the involvement of patients and their families in health care is a focal point in many countries [ 1 ]. This involvement may extend to a variety of healthcare components, from participation in informed decision-making to the provision of feedback on care provided [ 2 – 4 ]. In the intensive care unit (ICU), although both patients’ and families’ experiences are of great importance [ 5 ], patient involvement is complicated by the patient’s critical condition.…”

Section: Introductionmentioning

confidence: 99%

Satisfaction with quality of ICU care for patients and families: the euroQ2 project

et al. 2017

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BackgroundFamilies’ perspectives are of great importance in evaluating quality of care in the intensive care unit (ICU). This Danish-Dutch study tested a European adaptation of the “Family Satisfaction in the ICU” (euroFS-ICU). The aim of the study was to examine assessments of satisfaction with care in a large cohort of Danish and Dutch family members and to examine the measurement characteristics of the euroFS-ICU.MethodsData were from 11 Danish and 10 Dutch ICUs and included family members of patients admitted to the ICU for 48 hours or more. Surveys were mailed 3 weeks after patient discharge from the ICU. Selected patient characteristics were retrieved from hospital records.ResultsA total of 1077 family members of 920 ICU patients participated. The response rate among family members who were approached was 72%. “Excellent” or “Very good” ratings on all items ranged from 58% to 96%. Items with the highest ratings were concern toward patients, ICU atmosphere, opportunities to be present at the bedside, and ease of getting information. Items with room for improvement were management of patient agitation, emotional support of the family, consistency of information, and inclusion in and support during decision-making processes. Exploratory factor analysis suggested four underlying factors, but confirmatory factor analysis failed to yield a multi-factor model with between-country measurement invariance. A hypothesis that this failure was due to misspecification of causal indicators as reflective indicators was supported by analysis of a factor representing satisfaction with communication, measured with a combination of causal and reflective indicators.ConclusionsMost family members were moderately or very satisfied with patient care, family care, information and decision-making, but areas with room for improvement were also identified. Psychometric assessments suggest that composite scores constructed from these items as representations of either overall satisfaction or satisfaction with specific sub-domains do not meet rigorous measurement standards. The euroFS-ICU and other similar instruments may benefit from adding reflective indicators.Electronic supplementary materialThe online version of this article (doi:10.1186/s13054-017-1826-7) contains supplementary material, which is available to authorized users.

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“…Questionnaires used for measuring subjective health status can be either disease‐specific or generic, enabling the comparison of outcomes with other heart failure patients or across other disease groups, respectively . Patient‐reported outcomes can be used to assess the effectiveness of treatment, improve informed decision making, enhance the quality of care and management of patients, and to help allocate resources to patients who need it the most . Poor patient‐reported health status has also been shown to predict mortality and rehospitalization in patients with coronary artery disease and heart failure independent of traditional biomedical risk factors …”

Section: Introductionmentioning

confidence: 99%

Predictors of changes in health status between and within patients 12 months post left ventricular assist device implantation

Brouwers

Jonge

Çalışkan

et al. 2014

European J of Heart Fail

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Background Improving patient‐reported outcomes (e.g. health status) has become an important goal in left ventricular assist device (LVAD) therapy, in addition to reducing mortality and morbidity. We examined predictors of changes in health status scores between and within patients 12 months post LVAD implantation. Methods Health status [Kansas City Cardiomyopathy Questionnaire (KCCQ); Short‐Form 12 (SF‐12)] were assessed at 3–4 weeks after implantation, and at 3, 6 and 12 months follow up in 54 LVAD patients (74% men; mean age 54 ± 9 years). Results Patients experienced significant improvements in health status between baseline and 3 months follow‐up as assessed by the KCCQ (clinical summary score: F = 33.49, P < 0.001; overall summary score: F = 31.13, P < 0.001) and the SF‐12 (physical component score: F = 31.59, P < 0.001; mental component score: F = 21.77, P < 0.001), but not between 3 months and 12 months follow‐up (P > 0.05 for all). Higher scores on anxiety and depression over time, older age, lower ejection fraction, and more co‐morbidity were associated with poorer health status scores on one or both of the KCCQ and SF‐12 subscales. The majority of the between‐patient variance of the mental component summary scores (82.6%), but not the KCCQ overall summary score (41.9%), KCCQ clinical summary score (36.2%) and physical component summary scores (23.2%), was explained by the sociodemographic, clinical and psychological factors. Conclusion The majority of LVAD patients show a significant improvement in health status after LVAD implantation. However, there are large differences in individual health status score trajectories which are only partly explained by measures of disease severity pre‐LVAD, co‐morbidity and psychological stress.

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Challenge of Informing Patient Decision Making

Cited by 14 publications

References 42 publications

Clinical Outcomes After Continuous-Flow Left Ventricular Assist Device

Clinical Outcomes After Continuous-Flow Left Ventricular Assist Device

Satisfaction with quality of ICU care for patients and families: the euroQ2 project

Predictors of changes in health status between and within patients 12 months post left ventricular assist device implantation

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