The health care and societal costs of inherited retinal diseases in Australia: a microsimulation modelling study.

OBJECTIVES: To estimate the health care and societal costs of inherited retinal diseases (IRDs) in Australia. DESIGN, SETTING, PARTICIPANTS: Microsimulation modelling study based on primary data - collected in interviews of people with IRDs who had ophthalmic or genetic consultations at the Children's Hospital at Westmead or the Save Sight Institute (both Sydney) during 1 January 2019 - 31 December 2020, and of their carers and spouses - and linked Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Schedule (PBS) data. MAIN OUTCOME MEASURES: Annual and lifetime costs for people with IRDs and for their carers and spouses, grouped by payer (Australian government, state governments, individuals, private health insurance) and type (health care costs; societal costs: social support, National Disability Insurance Scheme (NDIS), income and taxation, costs associated with caring for family members with IRDs); estimated annual national cost of IRDs. RESULTS: Ninety-four people (74 adults, 20 people under 18 years; 55 girls and women [59%]) and 30 carers completed study surveys (participation rate: adults, 66%; children, 66%; carers, 63%). Total estimated lifetime cost was $5.2 million per person with an IRD, of which 87% were societal and 13% health care costs. The three highest cost items were lost income for people with IRDs ($1.4 million), lost income for their carers and spouses ($1.1 million), and social spending by the Australian government (excluding NDIS expenses: $1.0 million). Annual costs were twice as high for people who were legally blind as for those with less impaired vision ($83 910 v $41 357 per person). The estimated total annual cost of IRDs in Australia was $781 million to $1.56 billion. CONCLUSION: As the societal costs associated with IRDs are much larger than the health care costs, both contributors should be considered when assessing the cost-effectiveness of interventions for people with IRDs. The increasing loss of income across life reflects the impact of IRDs on employment and career opportunities.

Engaging Carers in Co-Design: Development of the Carer Readiness Tool.

INTRODUCTION: The Carer Support Unit (CSU) of the Central Coast Local Health District (CCLHD), NSW, Australia, developed, trialled and implemented a Carer Readiness Tool (CRT) to help carers gauge their readiness to care at home, highlight to hospital staff areas for additional support for carers, and provide evidence of carer engagement in discharge planning. DESCRIPTION: A rigorous co-design process was followed with carer consultation at key milestones in development of the CRT. The tool was piloted in two cancer/chronic renal disease inpatient units commencing November 2019. DISCUSSION: The CRT was well-received by carers who appreciated the opportunity to complete the tool in their own time, not in front of the patient. Positive feedback was received from clinicians, including the breadth of the CRT's content which contributed to better discharge planning. The need to manually incorporate a hard copy form into the electronic medical record is a limitation of the CRT. CONCLUSION: The CRT is context-specific and fit for purpose. During the development of the CRT, the project team focused on the face validity and usefulness of the tool. The next stage of the project will be formal evaluation of the tool to measure its impact.