Patient Perspectives on Communication of Individualized Survival Estimates in Heart Failure

Narayan, Madhav; Jones, Jacqueline; Portalupi, Laura B.; McIlvennan, Colleen K.; Matlock, Daniel D.; Allen, Larry A.

doi:10.1016/j.cardfail.2016.12.008

Cited by 17 publications

(15 citation statements)

References 17 publications

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“…First, patients feel strongly about their quality of life, 5 which is a primary goal of treatment, 6 and monitoring and sharing with patients the changes in their health status can be valuable. 7 Second, PROMs, such as the Kansas City Cardiomyopathy Questionnaire (KCCQ), have been shown to be strongly and independently associated with subsequent death and hospitalization. 8-11 This suggests that PROMs could be useful in risk-stratifying patients for more intensive therapy, a guideline-recommended process for clinical management.…”

mentioning

confidence: 99%

Association of Serial Kansas City Cardiomyopathy Questionnaire Assessments With Death and Hospitalization in Patients With Heart Failure With Preserved and Reduced Ejection Fraction

et al. 2017

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Importance While there is increasing emphasis on incorporating patient-reported outcome measures (PROMs) in routine care for heart failure (HF) patients, how best to interpret longitudinally collected PROMs is unknown. Objective To examine the strength of association between a prior, a current or change in Kansas City Cardiomyopathy Questionnaire (KCCQ) scores with death and hospitalization in patients with preserved (HFpEF) and reduced (HFrEF) ejection fractions. Design, Setting, and Participants Secondary analyses of the TOPCAT trial of 1,372 patients with HFpEF and the HF-ACTION trial that included 1,669 patients with HFrEF. Exposure Prior, current and change in KCCQ Overall Summary scores (KCCQ-os) in 5-points increments (higher scores = better health status) Main Outcomes and Measures Time to cardiovascular death/first HF hospitalization (primary outcome) and all-cause death (secondary outcome). Results Each 5-point difference in prior or current KCCQ-os scores were associated with a 6%-9% and 6%-8% lower risk for subsequent cardiovascular death/first HF hospitalization in patients with HFpEF and HFrEF in unadjusted analyses (all P<0.001). Results were similar for change in KCCQ-os. In models with the prior and current KCCQ-os, only the current KCCQ-os was significantly associated with 10% and 7% lower risk/5 points for subsequent cardiovascular death/first HF hospitalization in patients with HFpEF and HFrEF, respectively (all P<0.001). Similar results were observed when the current and Δ KCCQ-os were considered together, when adjusted for important patient and treatment characteristics, when including 3 sequential KCCQ-os scores and when examining all-cause death as the outcome. Conclusions and Relevance In serial health status evaluations of HF patients, the most recent score was most strongly associated with subsequent death and cardiovascular hospitalization in HFpEF and HFrEF. Measuring serial PROMs in the clinical care of patients with HF can provide an updated assessment of prognosis. Trial Registration URL: http://www.clinicaltrials.gov. Unique identifier: TOPCAT (NCT00094302) and HF-ACTION (NCT00047437)

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confidence: 99%

Association of Serial Kansas City Cardiomyopathy Questionnaire Assessments With Death and Hospitalization in Patients With Heart Failure With Preserved and Reduced Ejection Fraction

et al. 2017

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“…Elucidating this under ideal circumstances may be difficult, and likely more so with cognitive deficits. Similarly, while qualitative work suggests that patients with advanced cardiac disease are willing to have discussions about prognosis and goals, either real or perceived cognitive impairment may make such conversations less fruitful. Thus, confirming the prevalence and spectrum of cognitive impairment among ICD recipients, and its potential influence on defining goals, decision‐making, and communication, may be useful in designing interventions such as decision aids for ICD replacement or other advanced therapies such as ventricular assist devices …”

Section: Discussionmentioning

confidence: 99%

The D ecisions, I nterventions, and G oals in Impla N table Cardioverter‐Def I brillator T herap Y (DIGNITY) Pilot Study

Kramer

Habtemariam

Adjei-Poku

et al. 2017

JAHA

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BackgroundImplantable cardioverter‐defibrillators (ICDs) are commonly implanted in older patients, including those with multiple comorbidities. There are few prospective studies assessing the clinical course and end‐of‐life circumstances for these patients.Methods and ResultsWe prospectively followed 51 patients with ICDs for up to 18 months to longitudinally assess in terms of (1) advance care planning, (2) health status, (3) healthcare utilization, and (4) end‐of‐life circumstances through quarterly phone interviews and electronic medical record review. The mean age was 71.1±8.3, 74.5% were men, and 19.6% were non‐white. Congestive heart failure was predominant (82.4%), as was chronic kidney disease (92%). At baseline, a total of 12% of subjects met criteria for major depression, and 78.4% met criteria for mild cognitive impairment. From this initial study cohort, 76% survived to 18 months and completed all follow‐up interviews, 18% died, and 19% withdrew or were lost to follow‐up. Though living will completion and healthcare proxy assignment were common (cumulative outcome at 18 months 88% and 98%, respectively), discussions of prognosis were uncommon (baseline, 9.8%; by 18 months, 22.7%), as were conversations regarding ICD deactivation (baseline, 15.7%; by 18 months, 25.5%). Five decedents with available data received shocks in the days immediately prior to death, including 3 of whom ultimately had their ICDs deactivated prior to death.ConclusionsWe demonstrated the feasibility of prospective enrollment and follow‐up of older, vulnerable ICD patients. Early findings suggest a high burden of cognitive and psychological impairment, poor communication with providers, and frequent shocks at the end of life. These findings will inform the design of a larger cohort study designed to further explore the experiences of living and dying with an ICD in this important patient population.

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“…For example, in a large survey ( n = 600), patients who recalled having a prognosis discussion with a clinician endorsed higher satisfaction with decision making, end‐of‐life care, and with communication vs. those who did not recall having these discussions 21 . Additionally, in a small, qualitative study of patients with NYHA Class II–IV HF ( n = 24), those who elected to receive life expectancy estimates reported greater clarity and a sense of control and hope, regardless of whether the information received was positive or negative, though in this study, no data were reported for patients who declined this information 33 . Furthermore, in a pilot randomized trial of a palliative care intervention for high‐risk patients with HF ( n = 50), those randomized to receive the intervention were more likely to have revised their own prognosis assessment to align with that of their physician, with no adverse effects as reflected by depression, anxiety, or QoL 37 .…”

Section: Benefits and Consequences Associated With Discussion About mentioning

confidence: 66%

“…21 Additionally, in a small, qualitative study of patients with NYHA Class II-IV HF (n = 24), those who elected to receive life expectancy estimates reported greater clarity and a sense of control and hope, regardless of whether the information received was positive or negative, though in this study, no data were reported for patients who declined this information. 33 Furthermore, in a pilot randomized trial of a palliative care intervention for high-risk patients with HF (n = 50), those randomized to receive the intervention were more likely to have revised their own prognosis assessment to align with that of their physician, with no adverse effects as reflected by depression, anxiety, or QoL. 37 Overall, these findings suggest that discussions about prognosis specifically can promote a better understanding of HF and facilitate informed decision making and future planning, without compromising QoL.…”

Section: Benefits and Consequences Associated With Discussion About mentioning

confidence: 99%

“…One small, qualitative study ( n = 25) showed that most patients desired information about their disease, 31 while a cross‐sectional study with a relatively large sample ( n = 104) found that over 87% wanted to discuss what to expect in the future concerning HF and over 80% wanted to specifically discuss their prognosis 19 . Although a smaller study ( n = 24), other research has similarly shown that over 70% of patients elected to receive their individualized survival estimates even when informed that available models do not provide clear prediction 33 . Yet other studies show more variability within samples 17,35,36 .…”

Section: Patient Desire For Prognosis Communicationmentioning

confidence: 99%

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Dying to know: prognosis communication in heart failure

et al. 2020

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Prognosis communication in heart failure is often narrowly defined as a discussion of life expectancy, but as clinical guidelines and research suggest, these discussions should provide a broader understanding of the disease, including information about disease trajectory, the experiences of living with heart failure, potential burden on patients and families, and mortality. Furthermore, despite clinical guidelines recommending early discussions, evidence suggests that these discussions occur infrequently or late in the disease trajectory. We review the literature concerning patient, caregiver, and clinician perspectives on discussions of this type, including the frequency, timing, desire for, effects of, and barriers to their occurrence. We propose an alternate view of prognosis communication, in which the patient and family/caregiver are educated about the nature of the disease at the time of diagnosis, and a process of engagement is undertaken so that the patient's full participation in their care is marshalled, and the care team engages the patient in the informed decision making that will guide care throughout the disease trajectory. We also identify and discuss evidence gaps concerning (i) patient preferences and readiness for prognosis information along the trajectory; (ii) best practices for communicating prognosis information; and (iii) effects of prognosis communication on patient's quality of life, mental health, engagement in critical self-care, and clinical outcomes. Research is needed to determine best practices for engaging patients in prognosis communication and for evaluating the effects of this communication on patient engagement and clinical outcomes.

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Patient Perspectives on Communication of Individualized Survival Estimates in Heart Failure

Cited by 17 publications

References 17 publications

Association of Serial Kansas City Cardiomyopathy Questionnaire Assessments With Death and Hospitalization in Patients With Heart Failure With Preserved and Reduced Ejection Fraction

Association of Serial Kansas City Cardiomyopathy Questionnaire Assessments With Death and Hospitalization in Patients With Heart Failure With Preserved and Reduced Ejection Fraction

The D ecisions, I nterventions, and G oals in Impla N table Cardioverter‐Def I brillator T herap Y (DIGNITY) Pilot Study

Dying to know: prognosis communication in heart failure

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