Western Sydney LHD Centre for Chronic and Complex Care

About the Registry

The Western Sydney Clinical Frailty Registry is a prospective cohort study of patients admitted to Rehabilitation and Aged Care Services at Blacktown and Mount Druitt hospitals.

Leadership

The study is co-led by Professor Richard Lindley and Professor Caleb Ferguson. It takes a local approach to:

• understanding frailty status and related conditions
• improving health outcomes for older adults.

Current data

The Registry has enrolled about 1,000 older adults. It provides detailed, representative data on frailty status and patient outcomes, while also supporting capacity building across the Western Sydney Local Health District.

Recognition

The Western Sydney Clinical Frailty Registry is the only frailty registry listed on the Australian Registry of Clinical Registries (Registry ID: ACSQHC-ARCR-095).

About INFORM AF

INFORM AF is a digital education program co-designed with people living with atrial fibrillation (AF). It uses a mobile health (mHealth) app with spaced learning to deliver 6 to 8 case-based questions about AF.

Why it was developed

Research in Western Sydney and across Australia has shown major gaps in AF education. Patients, clinicians and experts highlighted the need for better, more accessible information. INFORM AF was created to address this gap.

Evidence so far

A recent study found that INFORM AF is feasible, acceptable and improves outcomes for people with AF. Participants showed:

• increased AF knowledge
• better quality of life at 6 weeks, 3 months, 6 months and 12 months.

Current research trial

INFORM AF is now being tested in a randomised controlled trial. The study will measure whether the program improves:

• re-hospitalisation rates
• overall survival
• hospitalisation due to cardiovascular causes
• medication adherence
• AF knowledge
• quality of life.
   

Funding

The trial is funded by the National Health and Medical Research Council and the Nancy and Vic Allen Stroke Prevention Memorial Grant, through the Stroke Foundation (Australia).

About the study

BANDAID-Explore investigated the education and self-management needs of people living with heart failure. The study aimed to better understand:

• what it is like to live with heart failure
• the types of information and support people need
• how education can improve self-management of heart conditions.

How the study was done

Researchers used an exploratory qualitative design. Focus groups were held at Royal Prince Alfred Hospital and The University of Sydney with:

• people living with heart failure
• their carers
• healthcare professionals.

What was achieved

Participants helped researchers identify priority areas for patient education. These findings will guide the development of a mobile health (mHealth) program called eTips. eTips will be evaluated in a future study, BANDAID e-TIPS, coordinated by the National Health and Medical Research Council (NHMRC) Clinical Trials Centre.

Funding

The study was funded by the Australian Government’s Medical Research Future Fund.

Research interests

Dr John Rihari-Thomas focuses on implementation science and behaviour change. He is particularly interested in translating research into nursing practice by working directly with clinicians.

Experience

For more than 5 years, Dr Rihari-Thomas has worked closely with clinicians to support large randomised controlled trials.

Current work – the ECO study

He is now leading the ECO study (Evidence-based Constructs to de-implement low value healthcare). This mixed methods pilot study is testing a ward-level intervention designed to:

• reduce routine low value care practices
• support the introduction of an assessment tool that identifies patients at risk of avoidable harm and
• ensures only those patients receive further screening.