Singapore Cohort of Patients With Advanced Heart Failure

Study Overview
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Brief Summary
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Chronic Heart Failure (CHF) is one of the leading causes of death in Singapore. Although it is well established that CHF patients in Singapore are less likely to be referred to palliative care services than cancer patients, little data is available on end-of-life (EOL) experience of advanced CHF patients in Singapore, including the inter-relationships between patient decision-making, quality of life trajectories, and health and cost consequences.

Detailed Description
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To address this gap and to identify areas for better delivery of end-of-life services to patients with advanced CHF, the investigators propose to enrol a cohort of 300 patients with advanced CHF (New York Heart Association class III and IV), survey the participants every 4 months for a period of two years or till they die, whichever is earlier. The goal of this cohort study is to better understand the relationship between patient preferences, health care access, utilization, costs, and quality of life, and to identify strategies to improve the EOL experience for these patients. It is also important to recognize the significant role of the family in medical decision making in Asia. Previous studies from Singapore reveal that patients want their families to be involved in the decision making process. The role of the family in decision making is consistent with the Chinese culture of interdependency, obligations and filial piety. Decisions regarding treatment are often made by family caregivers, sometimes with little or no input from patients. Given this reality, the investigators will also enroll caregivers of the patients to evaluate their role in decision making for treatment of patients.

Official Title
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Singapore Cohort of Patients With Advanced Heart Failure

Conditions
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Chronic Heart Failure

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria (patients): Age ≥ 21 years old Singaporean or Singapore Permanent Resident Diagnosis of advanced Congestive Heart Failure (New York Heart Association Class III and IV). Intact cognition (of patients ≥60 years of age) as determined by the Montreal Cognitive Assessment. If patient fails the cognitive test, he/she continues to be eligible for the study although self-reported data will no longer be collected. The primary informal caregiver of the patient will be approached for providing consent on behalf of the patient, to allow access to review of patient's medical and billing records The inclusion criteria (primary informal caregivers) Age ≥ 21 years old Main person or one of the main providing care to the patient (e.g. accompanying patient for doctor's visits, helping the patient with day to day activities) Main person or one of the main ensuring provision of care (e.g. supervision of foreign domestic worker so that the patient is looked after) Main person or one of the main involved in making decisions regarding treatment the patient receives Patient they are caring for is enrolled in the study The inclusion criteria (physicians) • Patients they are treating are enrolled in the study Exclusion Criteria (patients): Patients who are not Singaporeans or Singapore Permanent Residents Patients who are ≤21 years of age Patients with psychiatric or cognitive disorders Exclusion criteria (caregivers) • Foreign domestic workers/ maids will be excluded from this study

Ages Eligible for Study
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Minimum Age: 21 Years

Sexes Eligible for Study
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All

Study Plan
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How is the study designed?
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What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Change in overall quality of life among patients through the last year of life | Investigators will assess patient's quality of life through FACT-G Time frame: From recruitment to death of patient (baseline, 4 month, 8 months, 12 months, 16 months) | From recruitment to death of patient (baseline, 4 month, 8 months, 12 months, 16 months, 20 months, 24 months) | 
| Change in distress among patients through the last year of life | Investigators will assess patients' distress through the distress thermometer | From recruitment to death of patient (baseline, 4 month, 8 months, 12 months, 16 months, 20 months, 24 months) | 
| Change in activities of daily living among patients through the last year of life | Investigators will assess limitations in activities of daily living of patients through OARS Multidimensional Functional Assessment Questionnaire | From recruitment to death of patient (baseline, 4 month, 8 months, 12 months, 16 months, 20 months, 24 months) | 
| Change in patient's perceived quality of care during the last year of life | Investigators will describe patients' assessment of their own care using a scale used by Ayanian et al (JCO, 2010) that consists of 13 questions. | From recruitment to death of patient (baseline, 4 month, 8 months, 12 months, 16 months, 20 months, 24 months) | 
| Change in patient's compliance with treatment regimens and self-care behaviours | Investigators will describe patients' compliance with their self-care behaviour using the Self Care of Heart Failure Index (SCHFI) | From recruitment to death of patient (baseline, 4 month, 8 months, 12 months, 16 months, 20 months,24 months) | 
| Total health care expenditure during the last year of life through analysis of medical bills | Investogators will calculate total health care expenditure during the last year of patient's life as the sum total of expenditures incurred at clinics etc | From recruitment to death of patient (baseline, 4 month, 8 months, 12 months, 16 months, 20 months, 24 months) | 
| Change in patients' cognitive status | Investigators will assess patients' cognitive status through Montreal Cognitive Assessment | From recruitment to death of patient (baseline, 4 month, 8 months, 12 months, 16 months, 20 months, 24 months) | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Change in patient's awareness of hospice palliative care services among heart failure patients | Investigators will assess change in patients' awareness of hospice palliative care services by asking them if they are aware and are using hospice palliative care services. | From recruitment to death of patient (baseline, 4 month, 8 months, 12 months, 16 months, 20 months, 24 months ) | 
| Change in caregiver burden through the last year of life | Investigators will assess caregiver burden through modified Caregiver Reaction Assessment Scale Instrument | From recruitment to death of patient (baseline, 4 month, 8 months, 12 months, 16 months, 20 months, 24 months) | 
| Change in caregiver's level of emotional distress through the last year of life | Investigators will assess caregiver's anxiety and depression through the Hospital Anxiety and Depression Scale (HADS). | From recruitment to death of patient (baseline, 4 month, 8 months, 12 months, 16 months, 20 months, 24 months) | 
| Caregiver's perception of patient's end-of-life care assessed after patient's death | Investigators will assess caregiver perceived quality of end-of-life care through CEQUEL. | 8 weeks bereavement |