patient-, caregiver-, and relationship-level characteristics influence heart failure self-care...

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Rapid-Fire Abstracts II 028 Shared Decision-Making about End-of-Life Care for Heart Failure Patients with an Implantable Cardioverter Defibrillator: A National Cohort Study Anna Stromberg 1 , Ingela Thyl en 1 , Debra Moser 2 ; 1 Linkoping University, Linkoping, Sweden; 2 University of Kentucky, Lexington, KY Background: Whether to deactivate an implantable cardioverter defibrillator (ICD) at end-of-life is an important question for patients with an ICD. Expert consensus state- ments recommend physicians discuss end-of-life issues with ICD patients before and af- ter implantation and promote shared decision-making. The degree to which these recommendations are followed in patients with HF is unknown. The purpose of this study was to compare attitudes and knowledge about the ICD at end-of-life between ICD recip- ients with and without HF to determine how well HF patients could participate in end-of- life decisions. Methods: Every ICD patient in Sweden is enrolled in a national registry. We mailed a survey about attitudes, knowledge and experiences (the End-of-Life-ICD Questionnaire) related to the ICD and end-of-life issues to all registry patients. Data on quality of life (Euro-QOL), anxiety and depression (Hospital Anxiety and Depression Scale) were collected to determine if these affected attitudes or knowledge. Results: Of the 5,535 patients in the registry, 3,067 (1606 with HF; age 66611 years; 21% women) participated. Despite patients with HF reporting worse quality of life (p!0.001), and greater depression (p!0.001) and anxiety (p!0.001) than their counterparts without HF, their attitudes and knowledge about the ICD at end-of-life were very similar. Only 39% of HF patients discussed illness trajectory with their doctor, fewer (14%)dis- cussed deactivation with their doctor, and only 8% discussed their wishes with their family. A total of 40% of HF patients did not want to discuss deactivation with their doctor, and 64% felt that such discussions were warranted only as their prognosis wors- ened or they neared end-of-life (70%). Patients with HF had misconceptions about the ICD: 71% incorrectly believed the ICD always delivered shocks at the end-of-life; 27% believed ICD deactivation was the same as active euthanasia; 26% believed the ICD could only be deactivated by surgical removal; and 36% thought the ICD could be de- activated without their knowledge. With regard to deactivation of the ICD, 62% did not want it deactivated or could not make a choice even if they were dying of cancer. With regard to ICD generator replacement if needed, 54% of HF patients wanted it changed or were undecided (34%) in the context of being seriously ill with another condition; 65% wanted it changed or could not make a choice (26%) even if they were of advanced age. None of these attitudes or knowledge items differed from those of pa- tients without HF. Conclusion: ICD recipients with HF hold many perceptions about the ICD at end-of-life that could interfere with effective decision-making. Without bet- ter knowledge about their ICD and its performance at the end-of-life, or without dis- cussions with doctors and family members about these issues, HF patients with an ICD are ill-prepared to engage in shared decision-making about their ICD and its use at the end-of-life. 029 End of Life Resource Utilization in Heart Failure Patients with Preserved and Reduced Ejection Fraction Shannon M. Dunlay, Margaret M. Redfield, Susan A. Weston, Ruoxiang Jiang, Veronique L. Roger; Mayo Clinic Rochester, Rochester, MN Background: Healthcare resource utilization increases at the end of life in patients with heart failure. However, heart failure is a heterogeneous syndrome, occurring in patients with preserved (HFpEF) and reduced ejection fraction (HFrEF). While both populations are at high risk for mortality, it is unclear whether they experience dispa- rate end of life resource use. Methods: Residents of Olmsted County, Minnesota with heart failure were prospectively enrolled into a longitudinal cohort study from 2003- 2012. Patients who died prior to December 31, 2012 were included in this analysis. In- formation on hospitalizations, emergency department visits, and outpatient visits to local providers in the last year of life was obtained using administrative sources. Nega- tive binomial regression was used to assess the association between patient character- istics and resource utilization. HFpEF was defined as an EF$50% at study enrollment. Results: The 705 decedents (47.5% men, 53.3% HFpEF) experienced 1547 hospitali- zations (median 2 per person, range 0-12, 37.8% cardiovascular), 1730 emergency department visits (median 2 per person, range 0-20), and 13,021 outpatient visits (median 14 per person, range 0-119) in their last year of life. Most patients (81.4%) were hospitalized in the year prior to death; the median total days hospitalized was 9 per person (25 th -75 th percentile 3-21 days), and 199 patients (28.2%) died in the hos- pital. Adjusting for age and sex, patients with HFpEF had more non-cardiovascular hospitalizations (p50.010) and outpatient visits (p!0.001) compared to patients with HFrEF (Table). Patients who were older at the time of death had lower utilization. Conclusions: Hospitalizations are common at the end of life, and one-quarter of pa- tients spend more than 3 weeks hospitalized in the year prior to death. Younger patients and those with HFpEF have higher resource utilization. 030 Patient-, Caregiver-, and Relationship-Level Characteristics Influence Heart Failure Self-Care Maintenance Behaviors in Patient-Caregiver Dyads Julie T. Bidwell 1 , Christopher S. Lee 1 , Karen S. Lyons 1 , Shirin O. Hiatt 1 , Rosaria Alvaro 2 , Ercole Vellone 2 , Barbara Riegel 3 ; 1 Oregon Health & Science University, Portland, OR; 2 University of Rome Tor Vergata, Rome, Italy; 3 University of Pennsylvania, Philadelphia, PA Introduction: Many heart failure (HF) patients rely on informal caregivers to assist them with self-care maintenance behaviors that are essential to maintaining clinical stability. However, few studies examining maintenance utilize a dyadic approach that controls for statistical interdependence between patients and caregivers. Hypothesis: Patient-, caregiver-, and relationship-level characteristics influence maintenance be- haviors. Methods: This was a secondary analysis of cross-sectional data from an Ital- ian convenience sample of community-dwelling HF patients and their caregivers. Patient and caregiver contributions to HF self-care maintenance were measured using parallel versions of the Self-Care of Heart Failure Index. Patient health status, impair- ment in activities of daily living (ADL), cognition, and HF-specific quality-of-life (QOL) were measured using the SF-12, Barthel Index, Mini-Mental State Exam, and Minnesota Living with HF Questionnaire, respectively. Clinical HF data (dura- tion and hospitalization numbers) were abstracted from the medical record. Caregiver social support was measured with the Carers of Older People in Europe Index. A sin- gle item measure was used to assess dyad relationship quality. Data were analyzed using multilevel modeling (MLM), controlling for dyadic interdependence and com- mon confounders. Results: The average age of the sample (n5364 dyads) was 76.3610.8 for patients and 57.7614.6 for caregivers. Most patients were male (57.3%) with NYHA Class II/III HF (72.2%). Most caregivers were female (51.7%) and adult children (53.6%) or spouses (34.0%). Patient and caregiver main- tenance were highly correlated (r50.70), with significant variability across dyads. Pa- tient cognition (b50.2960.14, p!0.05), less ADL impairment (b50.1360.05, p! 0.01), worse physical health (b5-0.2860.10, p!0.01), longer HF duration (b50.0360.02, p!0.05), worse HF emotional QOL (b 5 0.4760.21, p!0.05), number of hospitalizations (b5-1.8660.89, p!0.05), caregiver gender (female b53.0661.4, p!0.05), higher social support (b50.7760.31, p!0.05), and better dyad relationship quality (b52.060.75, p!0.05) were significant determinants of patient self-care maintenance. Only longer HF duration (b50.0560.02, p!0.01) and worse patient HF emotional QOL (b51.0360.23, p!0.001) were significant de- terminants of caregiver contributions to maintenance. Conclusions: In this analysis of HF patient-caregiver dyads, a combination of patient, caregiver, and dyadic char- acteristics predicted patient self-care maintenance, while only patient characteristics predicted caregiver contributions to maintenance. This innovative analytic approach provides a robust means to examine the complexity and interdependent nature of dyadic care relationships that influence self-care. 031 Preliminary Evaluation of the Heart Failure Screening Tool (Heart-FaST): Assessing for Patient Barriers to Engagement in Heart Failure Self-Care Jan Cameron, Tina Habota, Chantal F. Ski, Skye N. McLennan, Peter G. Rendell, David R. Thompson; Australian Catholic University, East Melbourne, Australia Background: The Heart Failure Screening Tool (Heart-FaST) was developed to i) identify impairments in three functional domains (physical, cognitive and emotional Table (029). Multivariable Incidence Rate Ratios Comparing End of Life Resource Utilization by Key Factors Total Hospitalizations Cardiovascular Hospitalizations Non-Cardiovascular Hospitalizations Emergency Department.Visits Outpatient.Visits HFpEF 1.12 (0.98, 1.28) 0.96 (0.81, 1.14) 1.23 (1.05, 1.45) 1.07 (0.92, 1.26) 1.18 (1.08, 1.27) Male Sex 1.07 (0.94, 1.22) 1.24 (1.05, 1.47) 0.97 (0.83, 1.14) 1.00 (0.85, 1.17) 1.05 (0.97, 1.34) Age at Death (quartiles) !76 1 (referent) 1 (referent) 1 (referent) 1 (referent) 1 (referent) 76-83 1.04 (0.87, 1.23) 1.01 (0.81, 1.27) 1.06 (0.86, 1.31) 1.05 (0.85, 1.31) 1.08 (0.97, 1.21) 84-89 0.75 (0.63, 0.90) 0.91 (0.73, 1.13) 0.68 (0.55, 0.84) 0.87 (0.70, 1.08) 0.79 (0.70, 0.88) 90 and older 0.54 (0.44, 0.65) 0.59 (0.46, 0.77) 0.52 (0.42, 0.65) 0.73 (0.58, 0.91) 0.65 (0.58, 0.73) The 18 th Annual Scientific Meeting HFSA S11

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Page 1: Patient-, Caregiver-, and Relationship-Level Characteristics Influence Heart Failure Self-Care Maintenance Behaviors in Patient-Caregiver Dyads

The 18th Annual Scientific Meeting � HFSA S11

Rapid-Fire Abstracts II

028Shared Decision-Making about End-of-Life Care for Heart Failure Patients withan Implantable Cardioverter Defibrillator: A National Cohort StudyAnna Str€omberg1, Ingela Thyl�en1, Debra Moser2; 1Link€oping University, Link€oping,Sweden; 2University of Kentucky, Lexington, KY

Background: Whether to deactivate an implantable cardioverter defibrillator (ICD) atend-of-life is an important question for patients with an ICD. Expert consensus state-ments recommend physicians discuss end-of-life issues with ICD patients before and af-ter implantation and promote shared decision-making. The degree to which theserecommendations are followed in patients withHF is unknown.The purpose of this studywas to compare attitudes and knowledge about the ICD at end-of-life between ICD recip-ients with andwithout HF to determine howwell HF patients could participate in end-of-life decisions.Methods: Every ICD patient in Sweden is enrolled in a national registry.We mailed a survey about attitudes, knowledge and experiences (the End-of-Life-ICDQuestionnaire) related to the ICD and end-of-life issues to all registry patients. Data onquality of life (Euro-QOL), anxiety and depression (Hospital Anxiety and DepressionScale) were collected to determine if these affected attitudes or knowledge. Results: Ofthe 5,535 patients in the registry, 3,067 (1606 with HF; age 66611 years; 21% women)participated. Despite patients with HF reporting worse quality of life (p!0.001), andgreater depression (p!0.001) and anxiety (p!0.001) than their counterparts withoutHF, their attitudes and knowledge about the ICD at end-of-life were very similar.Only 39% of HF patients discussed illness trajectory with their doctor, fewer (14%)dis-cussed deactivation with their doctor, and only 8% discussed their wishes with theirfamily. A total of 40% of HF patients did not want to discuss deactivation with theirdoctor, and 64% felt that such discussions were warranted only as their prognosis wors-ened or they neared end-of-life (70%). Patients with HF had misconceptions about theICD: 71% incorrectly believed the ICD always delivered shocks at the end-of-life; 27%believed ICD deactivation was the same as active euthanasia; 26% believed the ICDcould only be deactivated by surgical removal; and 36% thought the ICD could be de-activated without their knowledge. With regard to deactivation of the ICD, 62% did notwant it deactivated or could not make a choice even if they were dying of cancer. Withregard to ICD generator replacement if needed, 54% of HF patients wanted it changedor were undecided (34%) in the context of being seriously ill with another condition;65% wanted it changed or could not make a choice (26%) even if they were ofadvanced age. None of these attitudes or knowledge items differed from those of pa-tients without HF. Conclusion: ICD recipients with HF hold many perceptions aboutthe ICD at end-of-life that could interfere with effective decision-making. Without bet-ter knowledge about their ICD and its performance at the end-of-life, or without dis-cussions with doctors and family members about these issues, HF patients with anICD are ill-prepared to engage in shared decision-making about their ICD and itsuse at the end-of-life.

029End of Life Resource Utilization in Heart Failure Patients with Preserved andReduced Ejection FractionShannon M. Dunlay, Margaret M. Redfield, Susan A. Weston, Ruoxiang Jiang,Veronique L. Roger; Mayo Clinic Rochester, Rochester, MN

Background: Healthcare resource utilization increases at the end of life in patientswith heart failure. However, heart failure is a heterogeneous syndrome, occurring inpatients with preserved (HFpEF) and reduced ejection fraction (HFrEF). While bothpopulations are at high risk for mortality, it is unclear whether they experience dispa-rate end of life resource use. Methods: Residents of Olmsted County, Minnesota withheart failure were prospectively enrolled into a longitudinal cohort study from 2003-2012. Patients who died prior to December 31, 2012 were included in this analysis. In-formation on hospitalizations, emergency department visits, and outpatient visits tolocal providers in the last year of life was obtained using administrative sources. Nega-tive binomial regression was used to assess the association between patient character-istics and resource utilization. HFpEF was defined as an EF$50% at study enrollment.Results: The 705 decedents (47.5% men, 53.3% HFpEF) experienced 1547 hospitali-zations (median 2 per person, range 0-12, 37.8% cardiovascular), 1730 emergencydepartment visits (median 2 per person, range 0-20), and 13,021 outpatient visits

Table (029). Multivariable Incidence Rate Ratios Compari

TotalHospitalizations

CardiovascularHospitalizations

NoH

HFpEF 1.12 (0.98, 1.28) 0.96 (0.81, 1.14)Male Sex 1.07 (0.94, 1.22) 1.24 (1.05, 1.47)Age at Death

(quartiles)!76 1 (referent) 1 (referent)76-83 1.04 (0.87, 1.23) 1.01 (0.81, 1.27)84-89 0.75 (0.63, 0.90) 0.91 (0.73, 1.13)90 and older 0.54 (0.44, 0.65) 0.59 (0.46, 0.77)

(median 14 per person, range 0-119) in their last year of life. Most patients (81.4%)were hospitalized in the year prior to death; the median total days hospitalized was9 per person (25th-75th percentile 3-21 days), and 199 patients (28.2%) died in the hos-pital. Adjusting for age and sex, patients with HFpEF had more non-cardiovascularhospitalizations (p50.010) and outpatient visits (p!0.001) compared to patientswith HFrEF (Table). Patients who were older at the time of death had lower utilization.Conclusions: Hospitalizations are common at the end of life, and one-quarter of pa-tients spend more than 3 weeks hospitalized in the year prior to death. Younger patientsand those with HFpEF have higher resource utilization.

030Patient-, Caregiver-, and Relationship-Level Characteristics Influence HeartFailure Self-Care Maintenance Behaviors in Patient-Caregiver DyadsJulie T. Bidwell1, Christopher S. Lee1, Karen S. Lyons1, Shirin O. Hiatt1, RosariaAlvaro2, Ercole Vellone2, Barbara Riegel3; 1Oregon Health & Science University,Portland, OR; 2University of Rome Tor Vergata, Rome, Italy; 3University ofPennsylvania, Philadelphia, PA

Introduction: Many heart failure (HF) patients rely on informal caregivers to assistthem with self-care maintenance behaviors that are essential to maintaining clinicalstability. However, few studies examining maintenance utilize a dyadic approach thatcontrols for statistical interdependence between patients and caregivers. Hypothesis:Patient-, caregiver-, and relationship-level characteristics influence maintenance be-haviors.Methods: This was a secondary analysis of cross-sectional data from an Ital-ian convenience sample of community-dwelling HF patients and their caregivers.Patient and caregiver contributions to HF self-care maintenance were measured usingparallel versions of the Self-Care of Heart Failure Index. Patient health status, impair-ment in activities of daily living (ADL), cognition, and HF-specific quality-of-life(QOL) were measured using the SF-12, Barthel Index, Mini-Mental State Exam,and Minnesota Living with HF Questionnaire, respectively. Clinical HF data (dura-tion and hospitalization numbers) were abstracted from the medical record. Caregiversocial support was measured with the Carers of Older People in Europe Index. A sin-gle item measure was used to assess dyad relationship quality. Data were analyzedusing multilevel modeling (MLM), controlling for dyadic interdependence and com-mon confounders. Results: The average age of the sample (n5364 dyads) was76.3610.8 for patients and 57.7614.6 for caregivers. Most patients were male(57.3%) with NYHA Class II/III HF (72.2%). Most caregivers were female(51.7%) and adult children (53.6%) or spouses (34.0%). Patient and caregiver main-tenance were highly correlated (r50.70), with significant variability across dyads. Pa-tient cognition (b50.2960.14, p!0.05), less ADL impairment (b50.1360.05, p!0.01), worse physical health (b5-0.2860.10, p!0.01), longer HF duration(b50.0360.02, p!0.05), worse HF emotional QOL (b 5 0.4760.21, p!0.05),number of hospitalizations (b5-1.8660.89, p!0.05), caregiver gender (femaleb53.0661.4, p!0.05), higher social support (b50.7760.31, p!0.05), and betterdyad relationship quality (b52.060.75, p!0.05) were significant determinants ofpatient self-care maintenance. Only longer HF duration (b50.0560.02, p!0.01)and worse patient HF emotional QOL (b51.0360.23, p!0.001) were significant de-terminants of caregiver contributions to maintenance. Conclusions: In this analysisof HF patient-caregiver dyads, a combination of patient, caregiver, and dyadic char-acteristics predicted patient self-care maintenance, while only patient characteristicspredicted caregiver contributions to maintenance. This innovative analytic approachprovides a robust means to examine the complexity and interdependent nature ofdyadic care relationships that influence self-care.

031Preliminary Evaluation of the Heart Failure Screening Tool (Heart-FaST):Assessing for Patient Barriers to Engagement in Heart Failure Self-CareJan Cameron, Tina Habota, Chantal F. Ski, Skye N. McLennan, Peter G. Rendell,David R. Thompson; Australian Catholic University, East Melbourne, Australia

Background: The Heart Failure Screening Tool (Heart-FaST) was developed to i)identify impairments in three functional domains (physical, cognitive and emotional

ng End of Life Resource Utilization by Key Factors

n-Cardiovascularospitalizations

EmergencyDepartment.Visits Outpatient.Visits

1.23 (1.05, 1.45) 1.07 (0.92, 1.26) 1.18 (1.08, 1.27)0.97 (0.83, 1.14) 1.00 (0.85, 1.17) 1.05 (0.97, 1.34)

1 (referent) 1 (referent) 1 (referent)1.06 (0.86, 1.31) 1.05 (0.85, 1.31) 1.08 (0.97, 1.21)0.68 (0.55, 0.84) 0.87 (0.70, 1.08) 0.79 (0.70, 0.88)0.52 (0.42, 0.65) 0.73 (0.58, 0.91) 0.65 (0.58, 0.73)