Singapore Cohort of Patients with Advanced Heart Failure (SCOPAH)

Duke University

Status: Active, not recruiting

Conditions: Chronic Heart Failure

Study type: Observational

Funder types: Other

Identifiers

NCT03089034

2016/3046

Details and patient eligibility

About

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.

Full description

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.

Enrollment: 300 estimated patients

Sex: All

Ages: 21+ years old

Volunteers: No Healthy Volunteers

Inclusion and exclusion criteria

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